Our story begins in June of 2002, when Neil and I were married.
As most do, we had hopes and dreams of a wonderful future together. In October of that same year, our daughter Hailey was born. She was perfect in every way. Nearly two and a half years later, we welcomed our son, Carter, into the world. Life was good, we had it all.
We had just purchased a new home, Neil owned a successful landscaping business, I was able to stay home and raise the kids, two nice cars and most importantly we had two beautiful, healthy children… a boy and a girl. We felt so blessed and never expected or wished for anything more, just a normal life.
Little did we know how “un-normal” our lives would become.
Hailey and Carter were always the most loving and affectionate kids, full of hugs and kisses for everyone. Did I mention that they were gorgeous?! Hailey, with her golden blond hair and sparkling blue eyes. Carter, with his beautiful big brown eyes, dark hair and perfect skin.
All of our dreams had come true and we knew that we had a bright future ahead of us. We always had such big ideas for the kids… teaching them so many new things, imagining what sport Carter would play, and thinking of all the dance and music recitals we would go to, cheering them along. We were going to be the best parents we could be.
Hailey had always developed typically, with the exception of a mild speech delay. We started her in speech therapy and thought nothing more of it. Then at the age of two and a half, when Carter was just seven weeks old, Hailey had a seizure.
Before this, I had never seen a seizure and didn’t know what was wrong with my baby. In a panic, I called 911 and we all rushed down to the hospital where she spent several long days. They ran every test imaginable on her, with everything coming back normal.
They told us that the seizure was most likely brought on by a fever and were sent on our way. Days later, she had another, and then another several days after that. The doctors then diagnosed her with childhood epilepsy and were told that she would grow out of it.
Fine… we could deal with that.
Even as her seizures became much more frequent and aggressive, as she began to regress and lose all of her skills that she had once mastered, we were still convinced that it was nothing more than epilepsy. After all, that’s what the doctors had told us.
She soon lost the ability to walk, talk, crawl and even eat around the age of three. Her one year old brother was surpassing her developmentally.
It was then that we realized this was something much worse than childhood epilepsy and we knew that we had to do something. If the doctors couldn’t fix her than we would!
We began researching alternative methods of treatment and have nearly tried them all. We took her to countless doctors and therapists, tried nearly every medication and vitamin supplement, diets, “miracle” pills, chiropractor, even herbs from an Amish doctor, all to no avail. What was happening to our daughter?
January of 2008, Carter had a seizure. I remember screaming out loud and begging God not to do this to us! I screamed at Him to make it stop and not do this to both of our children.
Over these two years, we had learned to deal with and accept Hailey’s disability, somehow still convinced that she would just “grow out it”. We were also motivated by Carter and knew that he would always be there to keep us going.
We were completely heart-broken to think that Carter could follow the same path as his sissy and we would now have to learn to deal with having two children with major disabilities. We couldn’t believe what was happening to us… doesn’t this kind of stuff happen to “other” people?
Still unaware just how bad things really were, we took them to see their neurologist in Cincinnati. Following a lot of blood work and lab tests, we were taken into the doctor’s office.
I found it a little unusual that there was a complete stranger in the room, a woman who introduced herself as a social worker. We knew then that we were about to receive some pretty bad news. The neurologist took a deep breath and informed us that both Hailey and Carter were suffering from Late Infantile Batten Disease.
We were relieved that we finally had a diagnoses (after years of testing) and we finally knew what was wrong with our babies. The relief soon turned into complete devastation as the neurologist explained to us exactly what we were in store for.
Batten Disease is a fatal, genetic brain disease. Currently, there is no cure or even treatment for this horrible disease. Batten disease takes no mercy on its young victims and we were informed that their seizures were likely to get much worse and probably be resistant to medication, they would soon become blind, demented, lose all motor control, regress to infancy, become bed-ridden and would die between the ages of 8 and 12.
It was a parents worst nightmare and that day, all of our hopes and dreams for our perfect family had gone out the window.
Unable to accept the fact that there was nothing we could do for our children, we immediately threw ourselves into researching.
It was then that we learned of a clinical trial at Cornell University (N.Y.). They were working on a possible cure for Batten Disease using gene therapy. Unfortunately Hailey was too far progressed to take part in this trial.
Still not willing to give up, we began speaking with other Batten parents and learned of stem cells in China. That was Hailey’s only hope and we knew that we had to do any and everything in our power to get her to China.
With the help of our amazing friends, family and community, we painstakingly raised $130,000. Each trip to China cost $50,000 and in August of 2008, we took our first trip to China and spent 7 weeks there.
Hailey received 4 stem cell injections, as well as P.T., O.T., Chinese medications, massage therapy and much more. She made remarkable progress and was no longer “on her death bed.” Before we went, her condition was so dire that the doctors in the U.S. gave her months to live and even informed us that she may die in China.
This was a risk that we knew we had to take for her because we also knew the risks of not getting treatment… she would die. We had to try and knew that we wouldn’t be able to live with ourselves if we didn’t at least try.
Contrary to what the doctors in the U.S. told us, she made fantastic progress and we credit the doctors in China to saving her life.
Our second trip to China was in January of 2009, where we spent another 7 weeks. Hailey received the same treatment as before and they were able to reverse even more of the damage caused by this brutal disease and stop it’s progression.
We knew that stem cells would not cure Hailey, but we were still very happy with the results. They greatly improved her quality of life and gave us more time with our precious daughter.
Our hopes for the stem cell treatment was that it would keep Hailey here with us long to see a cure. Unfortunately, Hailey lost her long and brave battle with Batten disease on January 17th, 2010. Although we ultimately knew that Hailey’s passing was imminent, it still came as a bit of surprise to us because she was stable and doing so well, since our last trip to China.
Four days before her passing, she became very sick. She was running a fever of 105, having seizures lasting 20 minutes or more (which she had never done) and was just not looking very well at all. Neil and I knew in our hearts that it was her time and that she was no longer able to keep up the fight. Her little body had simply had enough and it was time for us to say goodbye to our beautiful Hailey-Bear.
We knew that we wanted her to be at home and surrounded by loved one’s for this, so we called in Hospice. They provided us with several medications (including morphine) to keep her as comfortable as possible. With the help of oxygen and medications, Hailey clung to life for four long days.
On that fourth day, a Sunday, Hailey’s struggle to breath became much worse, even with her oxygen mask on. Neil and I held her, comforting her by singing to her, talking to her and praying for her until she took her final breaths in our arms.
Hailey died that night at 11:55 pm., at the tender age of 7.
I will never be able to put into words how painful and absolutely heart-wrenching it was to have our first-born child, our baby girl, die in our arms and watch her struggle to take her final gasps of air… then realizing that she was gone from our lives forever.
We treasure every single moment that we had with her and are honored that God believed in us enough and allowed us to care for such a special person, even if it was for such a short time. We have so many precious memories of Hailey, but how we like to remember her the most was before she got so sick and was still that affectionate, charming, enthusiastic (and sometimes a little mischievous) little girl who loved everyone.
I am also thankful for her making me a better mother, wife and person. I am much more grateful for the things I have, more compassionate towards others and have seen a side of myself that I never knew existed. We fought for Hailey for four long years and I did things that I never thought I was capable of.
We always pray for a miracle and prayed for Hailey to be miraculously healed. I know now that miracles come in different forms and this was Hailey’s miracle… to go to Heaven.
Although our lives will never be the same without her, we are incredibly happy for her, that her suffering is finally over and that she is finally free of that body that failed her. She can finally experience what childhood is like again, only this time in Heaven. I only wish that I could peek up there and see what she is doing right now. I cannot wait to be see her again, as the Hailey that we remember most.
While we mourn the loss of one child, we now have the difficult task of caring and fighting for our other child. Over the last several months, Carter’s condition has worsened dramatically. He is now no longer able to walk, crawl or talk, recently had to get a feeding tube and is beginning to lose his sight. We knew this was going to happen to him for a long time now and just as with Hailey, we thought we were prepared.
NO parent can prepare themselves for watching their child regress back to infancy or for their child to die. Fortunately for Carter, there is hope for getting him treatment right here in the U.S. at Cornell University (for gene therapy), which could possibly CURE him! We fought so hard for Hailey and our final promise to her was that we would always fight, until there was a cure for this terrible disease… for her, for Carter and so many others. We will fight just as hard for Carter as we did for Hailey and we WILL find a cure!
The doctors in N.Y. have very high hopes for this gene therapy trial, as they have had excellent results with their animal models. We know that the gene therapy will slow the progression of Carter’s Batten disease and we pray that it completely stops and reverses it’s progression, eventually curing him. We do believe that the doctors at Cornell will eventually find the cure for Batten disease (and other rare diseases like it), whether it be with this trial, the next or the one after that. We can only hope and pray that it will be this one, that Carter will participate in. This ground-breaking gene therapy treatment will eventually lead to cures to many other diseases such as Parkinson’s, Huntington’s, Alzheimer’s, ALS, MS, Heart Disease, the thousands of other rare diseases, some forms of Cancer, even AIDS.
The doctors will essentially replace the defective gene that causes Batten disease. That new gene will then begin to produce the enzymes that their brains are lacking and break up the brain cell waste that has collected in their brains over time, causing of all of these devastating symptoms, therefore reversing the effects of Batten disease and again, possibly CURING our son!
Neil and I are eternally grateful for all the support, donations and prayers that we have already received and ask of you to please help us continue the fight. We are continuing to accept donations and our goal is still $1 million, $10 at a time. This money could help fund the potential parallel study and future studies, cover expenses for our trip to New York for Carter’s treatment, and to help so many other desperate families, who are not as fortunate as us to have such an amazing support system in place. Carter and so many other children need our help, so that they can get the treatment that they so desperately need and deserve.
Together we CAN fund the research to find a cure for Batten Disease and many other rare, brutal diseases and save so many innocent lives. So let’s continue to spread the word and direct people to this website. Who wouldn’t want to be a part of a miracle?!
God Bless You All From The Bottom Of Our Hearts! With Love And Sincerity, Neil and Miranda Goranflo
Miranda and Neil- I am so sorry to hear of the trying times you are dealing with. Your children are precious and you are right they deserve a chance at life. I have faith that you will raise the money you need. God will continue to give you the strength that you need to make it through this storm. Please continue to love and support one another because you will need each other to keep from going insane. There are no words in my vocabulary that will make you feel better so I won’t try but know that you and your family are in my thoughts and prayers. I plan to ask my church to donate money and if there is anything else I can do please let me know. (I really mean that) I cannot imagine going through what you are going through but you never know what strange obstacles life will throw your way. Be strong and don’t give up trying to help your angels!
Miranda, Neil, Hailey, and Carter
Hey its Diana, I just want you to know taht we are praying for you and the kids. I know firsthand that you all are wonderful people and extremely good parents. I just want you to know that I think about you all on a daily basis. I hope you get the help you need for Hailey and Carter’s trip to China. Please know that you are truly one of my best friends. While dealing with your own struggles you took the time to help me with Jordan, and you always ask how he is doing no matter how much you have on your mind. We will continue to pray for all of you.
Love
Diana, Don, and Jordan
Miranda and Neil,
Hi my name is Andrew Britain, I am a student of Brandon Thomas. He recently talked to me and explained the situayion. I am truly sorry about what is happening to Hailey and Carter, and am praying for you. My band, Vacant will be opening up for Brandon at the Houston benefit. I can’t wait to help you guys out, and i honestly believe that things will get better. Wwill help in whatever way possible, and you will remain in my prayers. I look forward to helping you at the benefit.
-Andrew Britain
Miranda and Neil,
I know we only worked together for a short time Miranda, but I saw you on the news tonight; You have amazing strength. I am so sorry to hear of your children’s illnesses. I will keep you all in my prayers.
Sincerely,
Hollis Edwards
hey guys. we love you and we are so proud of your determination and all you have accomplished to get the word out. We will help with all along the way! This is so gonna happen. What’s the weather like in China in the summer?! See you all soon 🙂
Miranda and Neil,
I was Hailey’s Sunday School teacher at OCC last year until I had my baby. I wanted to let you know that your family remains in my prayers. Hailey is such a wonderful little girl, and as a mother my heart aches for you both. I am working on getting the word out, and I hope to have a few little suprises for your family in the future.
God Bless
Michelle Warner
Miranda and Neil,
I came across your story and I just wanted you to know that your children will be in my prayers. My daughter (age 3) had cancer as an infant and now she is a survivor. I truly believe in the power of prayer. Keep the faith and may God bless you,
Jeanne Boguszewski
Miranda, Neil, Hailey and Carter
I just wanted to let you know “GOD” loves you and he will always be with you. He will hold you in his big strong hands
trust in him and he will show you the way. I pray for you all some mighty strong prayers. I LOVE YOU WITH ALL MY HEART AND I WISH I COULD GIVE YOU ALL THE MONEY YOU NEED BUT I KNOW DEEP IN MY HEART GOD WILL COME THRU FOR YOUR FAMILY. He does some wonderful things I know because he has been there for me when I had cancer and when my husband passed away. Who ever reads this please pray for this family.I know the more prayers the bigger the miracles will be. THANK YOU GOD I KNOW YOU WILL HEAR ALL OF THESE PRAYERS. amen
GOD WILL BE WITH YOU ALL.
Andrea
Hi Miranda, we met today at the Kentuckiana Children’s Center. I will be sending an email about your situation and about the fundraiser on the 24th to most of my email list. I am honored to have met you and I am so sorry that your kids are so sick. They are darling, and I really feel for you. I will do what I can to help.
Jenny
Hi Miranda and Neil
I have never met you but I have read about your ordeal with the airlines. My heart breaks for your family. I am orginally from Newfoundland, which is a hot spot for this disease. My brother was affected by a genetic disease that our family carries. I know the struggle of trying to understand what is happening while still searching for some kind of hope.
I will pray that your family gets the miracle that these beautiful children deserve. Keep strong.
Tammy
My heart aches for you and your family. I am a mother of two. Both my kids a son and a daughter are in there twenties now. I went through a battle of my own to save my son’s life that lasted years. He almost died at the age of 12. We fought our medical system and he received treatment in England through donations towards a trust fund for him that local realtors began in 1997. His story was in the local paper ..the Vancouver Province and Reader’s Digest magazine. I can only know too well the feelings you must be experiencing. We never gave up. It has been over 10 years now…that period of my life still haunts me. I still have dreams.. He wasn’t supposed to make it..but is alive today. Although there are still some problems. His life was saved. Unfortunately the stress of our ordeal cost us our marriage after 27 years. But my baby ..is alive and for that I am so very thankful. We never gave up. I wish you the best.
God Bless
Marie Reynen
HEY MIRANDA AND NEIL,
I HAVE TWO BEAUITIFUL BOYS. I CAN ONLY IMAGINE WHAT YOUR GOING THROUGH. AS MUCH MONEY AND TRANSPORATION OPTIONS WE HAVE IN AMERICA SOMEONE SHOULD BE ABLE TO HELP. I AM FURIOUS THAT YOU WERE TREATED THAT WAY. PRAY AND GOD WILL DELIVIARY. YOU WILL BE IN MY PRAYS, ALWAYS.
IN CHRIST I BELIEVE,
SHANNA PEACOCK
So sorry to hear of your ordeal with the airlines. But am equally overjoyed at how God has brought this to national
attention! My prayer is that the hearts of many will be opened and you will have all treatments paid for soon.
But…not only paid for….that Hailey and Carter will be healed and touched by the hand of God. My heart goes out to you as parents….we have children and I have a grandson with a genitic disorder…whom we are praying for….(he is 7 years old)…praying that he will talk this year….it is so hard to see children suffer….but…just know that Jesus knows their pain…sees your tears….knows your heart is breaking….He’s there….He cares….and He will be glorified! I don’t know you…but I love you and your family…..you will be in my prayers!!!!
Perk Lapp
Neil and Miranda, our thoughts and prayers are with you. My Dad alerted me to your story. My family is in a similar situation. We are having difficulties with medical bills and are trying to raise money for our daughter Zoey’s stell cell infusion with her cord blood that we banked at birth. We thank God that she was found a candidate. It is a miracle there are enough cells for one infusion. We recently celebrated Zoey’s third birthday. She suffered from infantile spasms at 5 months and was diagnosed with epilepsy at 7 months. Zoey does not eat by mouth either. She had a g-tube inserted in her belly at 10 months of age and was recently diagnosed with a severe case of Cerebral Palsy which affects all four limbs. Zoey is at high risk for pnemonia, has difficulties breathing, turns blue with seizures and requires nightly monitoring by pulsox and oxygen. Zoey does not sit up, crawl, walk or talk. Thankfully she is able to let us know when she is uncomfortable and happy by crying or cooing. We have two developmentally normal children as well so your story is truly heart felt. I will continue reading your site and see if the office I work for could help contribute through our Charity Foundation. Unfortunately Zoey was not eligible for their consideration for several reasons. I wish there was something more I could do to help. I will check back and pray for your family always. God Bless and be well, Melanie Komninos, N.J.
I came across your story and had to post a comment. I was so overwhelmed by the whole thing. My heart is just breaking for you as a parent. I just made a very small donation to you. I wish that I could send more. It’s funny, just this morning I was saying how broke I am and how I am sick of living paycheck to paycheck and blah blah blah, but then I read something like this and it puts everything into persepctive. I’ll gladly give my last few dollars.
I hope that people continue to give. I will be blogging about your family on my own blog and hopefully it will inspire someone to help out as well.
All the best.
I was reffered here from the Jon and Kate plus 8 blog and read this story this really touched me and I would like to know where to send money to donate to you guys
your in my prayers and I hope the best for Hailey and Carter
I have read your story and am praying for your family. I worked for a respite care agency with two young men (brothers) with this very same disease. Although I was never able to work with one of them (he passed away at age 27 when I had been hired), I did work closely with his brother and their family. It is a scary disease, but I pray you will have the strength and faith to endure. God bless.
Dear Neil & Miranda: I share your pain as I have a 24 year old daughter, Jennifer, with Cerebral Palsy and the challenge over the years has caused me do look in many corners to help her. I am Jeff Schofield, a chiropractor by background, speak Mandarin, and saw you are wanting to take Hailey & Carter to China for Stem Cell Treatments. In the meantime, a much more cost effective way of getting Adult Stem Cells to heal them is a consumable product called Stem Enhance from Stem Tech Health Sciences. Also Stemflo http://www.stemflo.com is a companion to Stem Enhance. I personally take both as does Jennifer. This product is simply amazing. Please email me at jschofield4u@yahoo.com and I will send you some attachments to further help you understand the simple answer God created in Klamath Falls Lake in Oregon. Kind regards, Jeff Schofield DC PS it will cost about 90$ each a month to Try Stem Enhance and Stemflo.
Dear Neil and Miranda,
I came across your story on the Jon and Kate Plus 8 website. I am writing this with tears running down my face. I wish your children all the best and will continue to come back here to read the updates. I will certainly pass this web address on. A HUGE thank you to Jon and Kate for posting your story on their website. I hope that your story will make its way around the world and that you will get the support needed for your children to have their treatments.
God Bless,
Aimee
Dear Goranflo Family,
My prayers are with you, I have two daughters almost 3 and 9 months and I just can only imagine the heartache you are going through. You are wonderful and devoted parents and I am proud that you are standing up for your children and seeking medical attention wherever it will take you.
I am so happy to hear of the progress Hailey is going through after your trip to China! How incredible it is. Please keep us updated.
I read about your story on the Jon and Kate website, too. I am so glad they posted it on there, since I am from Texas and had not heard of your plight. I am going to post this on my Mommy Play group website, as well, in hopes that some more families will be able to help you.
God Bless you all!
Christina
Neil and Miranda,
I just want you to know that you are lifted up in prayers constantly. I understand everything has gotten better since you have posted this but i want you to know God is with you and wants the best for you. Our God is such a faithful and loving and caring God. He HATES to see you in pain. Because jesus was in so much pain but he did it for YOU and for precious Hailey and Carter. Trust that He is so caring that he wants you to live in joy and have faith that these beautiful children will live longer than any doctor could imagine them living. Please just have faith and tell satan NO! he WILL NOT tear you down. I am praying for you always and i really mean that. God will bless you for being faithful to His calling on your life and praising Him in this storm! May God bless you in a powerful way.
Neil and Miranda,
I am so sorry to hear about your children. I have a friend who lost her daughter to the same disease. It is truly a cruel disease, Kattie lived to be 14 but was unable to do anything for herself and had a feeding tube in at about 4 years old. We live in Canada so it is really unheard of here and thank goodness for the internet to help everyone understand what was happening and what would happen. Kattie was a beautiful girl and touch a lot of lives. Through it all her mum drew her strength from the Lord. They have a son as well and he is fine, carries no genes praise the lord for that. I have never heard of stem cell treatment for Battens but Kattie’s was just long enough ago that stem cell was pretty new. I don’t know if you have heard of Manatech products but we use them as well for Kattie and they seemed to help. They definitely didn’t hurt. Just know that you are in my prayers and I hope that a cure comes in time for your kids.
I read your story from a post on the Jon and Kate plus 8 website. I must say that I am heartbroken to hear about your precious children. I must say that a child has done nothing to deserve what they are put through sometimes. I have faith that everything will work out, the power of prayer is awesome. My son was diagnosed with a rare type of cancer when he has just 9 weeks old. They were able to remove his entire tumor and save his bladder and prostate when they were telling us there was a 90% chance they were going to have to remove both to get the entire tumor out. I will keep you in my thoughts, and I know your children will open others eyes on the how strong children are and how they do not deserve what they go through.
With lots of love,
Susan
Hello there.
I have just learned of your story tonight while I was on the Jon and Kate plus 8 website.
This is a very moving story and I am praying for you and your family.
Also I sent an e-mail to Ellen Degeneres’ website tonight. I let her know about your story and gave her the site address. I know its a long shot but it’s worth a try!
I will continue to spread the word and do all that I can.
God bless you!!
Melanie
-Ontario, Canada
Hi I read your story and I feel broken hearted to see Hailey and Carter going through this. I’m 14 years old and when I was a baby I was really sick. My mom would have to take to Jackson Memorial Hospital (Miami,Fl) every time I got sick. I had to medication everyday and they put me on Medicaid. My mother prayed to God for a miracle that I’ll be well and her prayer made me still alive today. I want to say that I’m praying for Hailey and Carter to be well; I’m also praying for the whole family. God bless you all
and I will definitely keeping in my prayers.
Love,
Sabrina 🙂
Pompano Beach, Fl
Hi I read your story and leaves me broken hearted to see Hailey and Carter going through this. I’m 14 years old and when I was a baby, I was really sick and my mother had to take to the hospital every time. Doctors prescribed me medication and later on put me on medicaid. My mom turned to God so I can be well and live a normal life. It wa my mother’s prayer that kept me well today and I thank God for that. I will keep Hailey, Carter, and the rest of the family in my prayers.
Love,
Sabrina 🙂
Pompano Beach, FL
I am so very sorry to hear about your kids. I too found this website from Jon and Kate’s website. I am touched by what your kids are going through. I hope soon the doctors find a cure. Your family is in my prayers.
Much Love,
Kat ❤
There is really not enough words that I can say to give you and your family some comfort just know that God has a plan, he does for all of us. Even tho at times we really don’t understand why things happen the way they do one day we will. My sister had cancer at the age of 4 we lived in Puerto Rico at the time and the only place that could really help her was here in the U.S. but my parents didn’t have the money for her to get the treatment. So they let the doctors in P.R. to operate on her to remove the tumor. It really didn’t help her and she was still suffering every day. My parents finally broke down one day and got to their knees and prayed we all prayed, I was only 3 and I too got down on my knees and prayed for my sisters life. The next day when we went to go see my sister and she was sitting on the bed laughing and playing with the nurses. The mass in her kneck was gone she was cancer free and has been til this day. She is now 29 and the mother of a healthy 5 year old boy, which is somthing they said she would never be, a mother. I’m sharing this story with you because you never know what God really has in store for us. Keep your head up always!!!! May God be with you and your family always. I will def get on my knees and pray for you and your angels.
Hello, my name is Sheneara Bailey. I am 15 years old. I’m so sorry to hear about wat you and your husband are going throough battling the disease that your children have. I go to church and I will tell my pastor to diefinitely pray for you and your family. But by Jesus stripes your chldren are healed and no weapon formed against them shall prosper they should fear no evil. They are so pretty and precious and sholdn’t have to suffer like this I will also pray for your family when I have the very time togive my all to them. Have faith and never set aside your children to think what another peson think of them. God doesn’t make everyones child the same some children are different. God is with them. You should always always ALWAYS have FAITH in you and BELIEVE IN yourself that your children are going to make it. They are going to make it you might not know but they are going to make it with prayers FAITH & BELIEVING in GOD….
To the Goranflo Family,
After seeing your story on the news, my boyfriend emailed me this link… I can’t tell you how sorry I am that y’all have to endure this unimaginable trial…I watched one of my dear friends struggle and despair when her 3 year old daughter lost her long and very difficult battle with cancer… no child should have to suffer so much, and no parent should ever have to watch their children suffer.
I want you to know that your children, despite having to live with such a horrible sickness, are so very lucky to have parents like you… parents who would do anything and everything possible to save them! I admire your strength and perserverance and will be sharing your story and this link with everyone I know… I wish you many blessings and may the cure for this disease come swiftly and surely to save little Carter.
God Bless You All!
Aubrey
Goranflo Family,
I saw your story on Fox 41 and knew I had to go to your website and see your family. It breaks my heart that your precious children have to go through something so tragic. I have two children of my own and I cant imagine being faced with something of this nature. I sent this website to everyone I know and joined you as a friend on facebook. I hope everyone spreading the word will get the money to try and find Carter a cure. I wish you all the best of luck and will forever keep your family in our prayers.
To the Goranflo Family:
I do not know you but after reading your story about your two children’s battle with Batten Disease, my heart goes out to you. How lucky both of your children have been to have two parents that love them so much. Keep your faith in GOD, who will see you through these very difficult times. The power in prayer is amazing. Most all comments left for you and your family said they would pray for you all. Well you can add me to your list. I too will pray for you and your family.
I donated $10.00 to help you reach your $1,000,000. goal. Wished I was able to give you much more, but I am going to email some friends and family to try and help you get this money as soon as possible.
God Bless You All!
Patricia Payne
.
Thank you for your prayers and donation Patricia. And telling friends is the key to this campaign. James 1:17 says faith without works is dead. So, we’ve got our faith and we’re keeping up the work with great people like yourself right there with us! Keep checking back today as several site revisions are going up including video and an Updates page to track the progress of the Valentines Day Miracle campaign.
Goranflo family,
My husband and I endured the loss of our first child, our daughter due to Turner’s Syndrome and we were very moved by your story.No one can ever imagine the pain of losing a child – we sympathize with you and send you caring thoughts and prayers. We have sent a donation to be a part of the miracle and thank god for parents like you that try to find a cure.
God Bless.
The Kalvars
Hundreds will be praying. Hopefully more.
I am so sorry.
Tonight at dinner my mother shared your story with my family. Your brother Mike Roberts was my younger brother’s guitar instructor, and we were informed through him. I do not have the means to give any money to this cause, and for that I am sorry. But I want to tell you that I will be spreading word of the situation and this site. Also, and more importantly, I will be praying and I will be asking for prayers from others. I attend Boylan Catholic High School in Rockford, IL, and I know of many people who will be deeply moved by the overwhelming tragedy of your story. Their is also a Poor Claires convent located in Rockford. They are a cloistered convent and spend their everyday in prayer. I will be contacting them and asking for their prayers and thoughts. Carter is loved, by you-his family- but also by many others around the world, and by our saving Lord. He will be in my thoughts and prays, and he will be in my words.
With a bleeding heart, Maria
Thank you so much Maria. By you feeling in your heart how important this is and telling people to visit http://www.haileyandcartersdream.com, you are helping our campaign tremendously. Tell your mom I said hello and thank you again, and tell Gabe I said Hi too. (btw – I saw you guys’ pictures in the Christmas card! Was that Hawaii? Lucky!)
I just read your story. Even though I’m going through this disease process as well, I cant believe how fast your little angels have been attacked. I can’t tell you enough how sorry I am. This is so unfair to all involved. I cried reading this story and even though Haileys story could be Kaitlin’s in the future, I still can’t fatham her dying in my arms. If there is anything I can do for you, I will do it. I am speechless as to what to say because I know alot of what people tell me sounds silly and I don’t know what to say that will hold to the gravity of the situation. Hailey was so beautiful and I wish her and all children affected could have a different outcome. I will spread the word out here for your miracle and do all I can to bring awareness to your(my) fight. Again, if there is anything I can do, please let me know.
All our love,
Becky and Kaitlin Bowman
Becky, I’m Carter’s uncle and I’m going to make sure Miranda sees and personally replies to your sincere and thoughtful words. I know the feeling of not knowing what to say, but you said everything perfectly. We’re praying for this miracle on Kaitlin’s behalf as well as Carter’s. If your personal passion helps make this miracle happen, I know it will have just as much to do with Kaitlin as well as every Batten child. I don’t pretend to fully understand what Miranda, yourself and every other parent must feel. I have three healthy boys, and one thing for sure is that during the last few weeks as I’ve been away from home in Rockford, IL to help help with this campaign, I’ve appreciated their health more than I would have ever imagined I could. We’re fighting together, and I can’t wait to see how this miracle plays out. Be watching for Miranda’s e-mail today.
Miranda, I first learned of you and your children this past fall when a news story was done on 2 little boys with Batten’s (Drew and Trent) who live by me. Every time you have written, I read it over and over. My baby girl is 2 and a half and I was “shaken” with terror and grief as I learned your story. It strengthend my faith in God. Thank you for for sharing your thoughts and faith. Your faith in God was and is very inspirational. I thank God for you (for helping me). I pray that he fills your heart with what you need. I don’t “know” you, but I love you and your family.