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3/9/10 Update

Cornell Update
As we mentioned before, preparations for the clinical trial are underway and we’re now at the point where “waiting” is the name of the game. As we understand, Carter could still be within the research parameters for the study. If that ended up being the case it would be our joy to help other families whose children did not qualify* so they could seek out other treatment options.

It’s tough, of course, because everything is about “chances.” There’s a chance he could get into the clinical trial. There’s a chance he could not. If he did, there’s chances involved with the results. If he doesn’t make it into the trial, there’s a chance that other options could become available (a parallel study, treatment in other countries, etc.), which is where the fund raising still plays a vital role.

Being a parent with these kinds of uncertainties is an emotional roller coaster, to say the least.

Donations Update
Money has continued to come in, and we’ve had some sizable donations lately. We’re still marching toward the goal we started with, the word is still spreading, support is still growing, and we are encouraged.

Currently our donations total, including pledges, is at $59,584.28. That’s over $39,000 that’s come in since February 1st, all because people are opening their hearts and spreading the word!

Rockford Benefit
We spent time this weekend talking about plans for a large charity auction benefit in Rockford, IL. At this point we’re looking at the first of May, but we’ll post more details this week as we work it out. There will be a lot of items to bid on and a professional auction company is helping out. There will even be a house up for auction! That’s right, we said a house!

Please continue to pray for Carter and for children suffering from Batten Disease. We’ve talked about it before, but there are about 200 families worldwide, about 50 of those currently in the U.S. They all need our prayers and support, the children, the parents, everyone.

*Just to reiterate, by “qualify” we are not talking about having enough insurance, or enough money, or anything arbitrary. Because this is a research program, participants must meet an extensive set of criteria that ensures the study will be accurate. Some children will fall within the parameters and some will not. That’s just the sad reality that we have to face.

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2/25/10 Update

I spent quite a while on the phone with Miranda last night. Right now we’re in a holding pattern just waiting to hear more from Cornell now that the clinical trial is “underway” – meaning we know the funding is in place and that at least one family whose child is on their list has been contacted. Carter’s name is also on that list, so our prayers are focused on hearing some good news.

Miranda told me Carter was having a really great day. He was taking a bath at the time. He likes to play in the bubbles and is surrounded by bath toys and he does A LOT of splashing. It even takes extra towels for the floor by the time he’s done!

He’s also doing really good at school. All the kids love him, and the girls even fight to see who gets to help him! I think it’s a good thing for kids to be involved like they are. It can make them more compassionate as they grow older.

Carter’s therapy in school includes occupational, physical and speech. They work with him on sitting up and using his hands more, like being the “flag holder” when they say the pledge of allegiance. That’s one of his favorite things. All the kids take turns holding the flag and the funny thing is that when it’s not Carter’s turn he actually gets mad and shows it!

At lunch the teachers puree Carter’s food and feed it to him by mouth, so they don’t have to use the formula through the tube, and they say he’s eating really good.

Also, I thought this was adorable: Carter loves his school bus! When they sit on the front porch in the morning and watch for it he sees several big buses go by and has no reaction. But when the “little bus” pulls up his feet kick and he gets excited. He knows that little bus is for him!

Today we’ll post another financial total, but obviously things have slowed down since Valentine’s day. There may not be any big changes, but the donations do keep coming in and the Facebook group keeps growing (as of right now it’s only 45 people away from 7000 members!).

Please keep praying for Cornell and all the children in desperate need of a cure for Batten. Please also continue to pray for Miranda and Niel’s strength during this time, and don’t hesitate to leave your encouragements and/or prayers in the Comments section below or on Facebook. Those seemingly little things really do make a big difference. God bless you!!!

2/19/10 BIG Update!!!

I’ve already been “gotten onto” about my slack with these updates lately. I know! I know!

Now that I’m back in Rockford, I’m tending to personal business as well as keeping the ball rolling with everything pertaining to Carter and Cornell and how this not only affects our family but so many others in this fight. Soooo, I’m finding myself with not enough time to do everything. (Plus my Blackberry is still broken! Long story!)

BUT WE’VE GOT BIG NEWS, so hopefully I can make up for the slack by giving an extensive update.

Deep breath…

First, About Carter…

Miranda is reporting that he’s doing very well. He’s eating by mouth again (soft, pureed foods) and not choking. He’s also drinking out of a sippy cup and is actually sucking out of the cup, which is a major accomplishment for him right now!

He’s back to sitting up on his own, and even pushing himself up from flat on his stomach to his knees and hands, even rolling himself over! His speech is slowly improving and he’s now saying “hi” and “uh oh” again. He keeps playing with toys, whereas he went through a period of not even looking at them. He’s also becoming more emotionally expressive with happiness and, yes, even agitation!

A lot of these are signs of recovery from his G-tube surgery, which doesn’t always happen this well for Batten children. Carter is a fighter, and we can see him really giving it everything he’s got.

Plus TERRIFIC News from Cornell…

The NIH funding for the clinical trial is now in place! That was a major first hurdle and it gets everyone that much closer to a potential cure for Batten Disease. We know of at least one family who’s already been contacted as part of the initial screening process, so everyone is feeling encouraged.

In January, Dr. Ronald Crystal of Cornell said, “We are working very hard and I think together with the parents of children with this disorder and other investigators we can develop a strategy to successfully treat this disorder, not only for Batten Disease, but for a number of these rare, genetic diseases of the brain.”

Please pray, pray, pray for Dr. Ronald Crystal and his team at Cornell that they would be guided by God’s hand of providence as they are now able to proceed.

About the Clinical Trial vs. the Parallel Study…

Who is admitted into the clinical trial is guided by an extensive list of “inclusion criteria.” Cornell needs to have a very tightly controlled study to produce reliable results. That being said, we now understand that Carter getting into the main clinical trial is NOT out of the question! He’s seems to be a little closer than we originally understood.

Should he be admitted into now fully-funded clinical trial, the money we’re raising could then be targeted to help fund further research (like the potential of a parallel study), cover the expenses of our trip to N.Y. and to help other Batten families in need.

The possibility of a parallel study, which could “supplement” the clinical trial to treat more children, was originally discussed in the summer of 2009. Understandably, it has been a side issue in comparison to getting the main clinical trial off the ground. At that time, Dr. Crystal expressed that a considerable amount of additional approvals and funding would have to take place in order for it to become a reality. (Hence, our Valentines Day Miracle campaign.)

But we must be clear: the parallel study is not now nor has it ever has been guaranteed to happen. This was simply an idea that Dr. Crystal was considering, on a compassionate basis. Dr. Crystal understands that it could be the only chance at life-saving treatment for many children. But that doesn’t change the fact that many hurdles would still have to be cleared, and these take time.

Should the parallel study become more than just a consideration, we would love to say to Cornell “you take care of the protocols, WE will take care of the funding!” That’s why this goal of $1 million is STILL just as important to us even though we didn’t hit it by Valentines Day.

We must also be clear that the decision of who’s included in any aspect of this research has nothing to do with personal preferences or bias or, certainly, how much money a family has. Cornell isn’t “selling slots.” You can’t buy your way into clinical research.

The money we’re trying to raise would impact the potential of a parallel study or, should that not happen, could go to help Carter and other Batten children who must pursue other treatment options. So please keep donating and spreading the word!!!

Life as a Batten Parent…

If you’re following along with everything, you might be getting an inkling of an idea of how difficult life is as a parent of a Batten child, where the only certainty is uncertainty. These parents are heartbroken, desperate, even terrified, their children’s lives are at stake (Batten Disease has a 100% fatality rate), and it’s no one’s fault that things are SO complicated… not Dr. Crystal’s, not Cornell’s, not the government’s. It’s just that, in a situation like this, where the stakes are high and the outcomes unclear, every step must err on the side of caution.

Are you getting the picture? We must all KEEP PRAYING for everyone involved in this battle!

And Finally, the Campaign Totals…

Bear in mind we already had nearly $20,000 from previous fundraisers for Hailey. That amount, in addition to donations and pledges since Feb. 1, brings us to $57,161.64!!!

Though it’s far from our goal, that’s a tremendous amount of progress, averaging more than $12,000 per week since we started. For that reason, we thank God for all you’re doing to help make this miracle happen!!!

2/17/10 Update

Continue to pray. We have had several breakthroughs and are expecting (by faith) that one or all of those will come to fruition TODAY. (Some already have, just since I started typing this update!!!)

A little later, we’ll post a new donations total. Miranda and Neil are continuing their work from home in Louisville, while Donna and myself are now working from our home in Rockford, IL. As soon as we meet by Skype today we’ll get those numbers up so you can see how this Miracle is still unfolding.

Our sights are firmly set on helping not only Carter but other Batten families as well. Their fight involves courage, prayers and, yes, finances. As Neil and Miranda have experienced first hand, having a child with Batten takes a toll in every area. Keep praying!

More details will be posted later today.

2/15/10 Update

Everyone has been trying to get a little rest today, understandably. It’s hard when we know how urgent it is that things happen for Carter and the fight to find a cure for Batten. But it’s still necessary. So please forgive the late post.

Total amount raised: $54,462.93.

That includes money we had previously raised for Hailey (about $20,000), plus all monies sent in since Feb. 1, as well as pledges received yesterday.

Today we were e-mailed on behalf of another large organization (the third since yesterday) with the possibility of helping out. These things take time and don’t always unfold the way you expect, but the fact that Carter is getting this kind of attention and concern is very encouraging. We’ll let you know what happens!

As you know, we started with a goal of $1 million by Valentines Day. Now what? Yes, we are still raising money. The home page has been updated, so you can keep driving people to the site. The principle of telling four people, who tell four, who tell four… is still working!

And we are still trusting God that He is making everything work out perfectly as it must. As it turns out, there are still conditions that need to line up before the parallel study can take place. So, in a sense, we still have time.

Our world is closer than it’s ever been to seeing the answer to this and other genetic illnesses, and we are praying that this will impact Carter and other children fighting Batten. We want things to be different this time.

What is different now is that we have a “support group” of over 6,100 people (and still growing!) on Facebook. We’ve also had thousands of donations from around the globe. That’s more than anything else we’ve ever seen. Plus, we’ve “unintentionally” inspired courage in thousands who are just hearing our story for the first time.

So, if we didn’t hit the million like we wanted to, what did we accomplish?

We (you, us, everyone) have created momentum, we have shook the earth, we have made a difference. If you want to know exactly how we plan to continue, stay tuned. For now, keep spreading the word!

2/14/10 Evening Update

Thank You to everyone who has given, everyone who has prayed, everyone who has helped spread the word.

We’re still a ways off from the goal, but we’re SO far from where we started!

Today alone almost $9,000 has come, which puts our campaign total at near $33,000. That’s in two weeks of typing on keyboards, sending e-mails, updating Facebook pages, making phone calls. Anyone that’s in fund raising knows that, unless you stage elaborate Gayla affairs, you just don’t raise that much in 2 weeks.

So, our account total is now sitting near $53,000. These numbers are rough because donations are still coming in and we’re not punching everything in the calculator just yet. Plus, several of the major news broadcasts here in Louisville have yet to air.

Our event at Heart of Fire Church today was phenomenal. Bishop Dan Johnson and his church family received us with open arms. In fact, in that service alone, we raised $1,000 just from the people who were there. In addition to that, people got on their phones and began calling friends and connections. One man that works with the VFW got matching pledges from several posts at $1,000 EACH!!!

We know there is more to come from those dear people alone. And we’ll update you again tonight after the news stations run and we see what effect that has.

We’ve been asked how we’re feeling, are we still encouraged? Absolutely. We did not go into this to make headlines or become celebrities. We got into this because we had no choice. Funding for the research that could save Carter’s life will simply take too long through traditional channels. Time is not our friend. We are doing what we feel we have to.

Will we keep raising money after today? If it is necessary, then of course we will. In fact, we’re already aware of many people who will be coming into a Fifth Third bank after tomorrow’s holiday, plus there are people who have mailed their donation. So we’ll just keep adding to the total.

Michaelangelo said “the problem is not setting goals too high and missing, but setting them too low and hitting.” Did we set our goal too high? Let’s be clear, WE didn’t set the goal… the costs of potentially life-saving research did. Even still, we’d rather be known as the bunch of nut jobs who tried to raise a million dollars in two weeks and had to settle for $53,000, than the bunch of couch potatoes who did nothing (no offense to furniture or vegetables).

2/14/10 Morning Update

Today is the day! Help make a MIRACLE happen by clicking HERE.

Forward this link to four friends with a personal note: http://www.haileyandcartersdream.com.

And if you’re in the Louisville area today join us at Heart of Fire Church at 5101 Bardstown Road from Noon to 4:00pm for food, drinks, live music and a celebration!

“And God is able to make all grace abound toward you; that ye, always having all sufficiency in all things, may abound to every good work… Thanks be unto God for his unspeakable gift” (2 Corinthians 9, verses 8 & 15).