Our Story

We are the parents of two beautiful children. Our names are Neil and Miranda. Hailey is 5 and Carter is nearly 3. We are currently in a fight to save their lives. On Tuesday, January 29th, they were both given a death sentence. We were devastated to learn that they have a fatal degenerative brain disease called Late Infantile Batten Disease with a life expectancy of 8-12 years. This disease takes no mercy on it’s young victims. They will both become very sick, suffering from seizures, loss of muscle control, be completely blind, demented, and bed-ridden until the disease takes their lives, far too soon. Those with the disease are not able to produce the enzyme needed to clear toxins from the brain, so they build up causing severe damage.

Battens disease is an inherited genetic disorder. Two parents must have the same defective gene to cause the disease. Meaning they cannot get the disease, but are carriers. We passed it down to our children and should we ever decide to have more, they would face a 1 in 4 chance of inheriting the disease also. A chance we are not willing to take. Nothing is more difficult than watching your children suffer so much.The chances of this happening are 2-4 in 100,000. There are only 200-300 people living with the disease in the U.S., mostly children. It is extremely rare. There is currently no treatment and no cure.

Our daughter, Hailey, has suffered so much and been robbed of so much due to this disease. She was a typical child until the disease started showing it’s effects at the age of 2 1/2. Over time she has endured thousands of seizures, lost the ability to walk and talk and requires a feeding tube to eat. She went from an energetic, affectionate, smart little girl that loved books, dolls, playing with friends and helping us, to a little girl that can barely even sit up, crawl or eat unassisted. She needs constant care now. Please take the time to learn more about her under “Hailey’s Full Story.”

We were crushed to learn that our son, Carter, will suffer the same fate. We never would have dreamed anything like this would happen to him too. He has always been the one to keep us going. We don’t know what we would have done without him. He is in the beginning stages of the disease and is still able to walk and talk, though he is delayed. He has recently started having seizures as well as other symptoms of the disease, like behavior problems. You can also see the rest of his story under “Carter’s Full Story.”

We cannot express to you in words just how truly heart-broken we are. We feel as though all of our dreams have been taken from us. It is unbearable knowing that your children will suffer so much and die. The only thing getting us through this, is knowing we are doing everything in our power to help them.

Upon learning of their diagnosis, we immediately began researching. Only to find out there are only two clinical studies in the U.S. to help treat Battens. They have recently ended and will not start back up for several months to a year. They have waiting lists and only take a limited number of children. We were informed that they will most likely not be able to treat Hailey anyway, as she is too far into the disease. We have never felt so helpless in our lives.

We have spoken with dozens of other affected parents from around the world, doctors from all over the country and support group leaders and have learned of another option. It is Stem Cell implants in China. While China is certainly not our first choice, it is our only choice for now. We will go anywhere and do anything to give our children a chance at life. Stem cells are not a cure for Battens, but can stop the progression of the disease and repair some damage. Researchers in the U.S. are close to a cure, but it is still years out. The idea is to keep them here long enough to see that cure. The children that have gone there, after being rejected from trials here in the U.S., have had excellent results. You can read some of there stories and learn more about stem cells in China in the “links” section. We have spoken with the doctors there and they have agreed to treat Hailey at a hospital in Beijing. Unfortunately, that hospital will not be able to treat Carter, as he is too young. He was however, accepted to another hospital in Hangzhou, China for the same treatment.

The treatment in China will require three separate trips for two months each. Hailey’s treatments will be $50,000 each and Carter’s will be $25,000 each. Not everyone has that kind of money laying around. We certainly don’t and we are asking for help. This may seem a bit overwhelming, but we have no other choice… we have to save Hailey and Carter. We figure if we can get our message sent to enough people, it would not be that hard to raise the money. We have to move quickly though, as time is not on our side. We are losing our children to this disease right before our very eyes. Please find it in your heart to help us give our babies a fighting chance at life. I pray that no other parent reading this will ever have to endure the true pain and heart-ache of watching your child suffer through such a terrible disease, or worse… losing that child. As you all know, you can never take your childrens’ health for granted. Through all of this, we have learned that health is the most important aspect of life and you are truly blessed if you are fortunate enough to have the health of your family. We pray everyday that God delivers us our two miracles… the health and happiness of our children.

To make a donation, simply go to the “How Can I Help” section or the “Donate now via PayPal” section. There you will also find a link to the Batten Support and Research Association. You can make a donation there as well, to help researchers find a cure for everyone affected by Battens disease. The amount of support that we have already received has been overwhelming. We are truly grateful. Thank you so very much.

Neil and Miranda Goranflo

(Please see our current updates to see how Hailey and Carter are doing now)

DONATE TO HAILEY & CARTER HERE