Reed Update and New Vlog Posted:
I realized I haven't done a very good job updating on Reed and his condition and how he is doing. Reed is doing really well since our stay in Iowa City with the flu in February we would say he has bounced back to where he was at prior to that stay. He is very active is looking forward to school and cubbies starting back up. He is able to scoot around again to get where he wants to go so that is helpful. He had a great day at therapy today and one of the best days I have seen in him in OT with his hand stability. My parents went to the United Leukodystrophy Conference last weekend and were able to meet and talk with the two leading researchers in VWM some really exciting and hopeful and encouraging conversations were had during the meeting and that hope for a cure has never been this close within their reach!!! The key here will be to keep Reed healthy and time and money (of course) but we are excited by the work that is being done. We have some ideas in the works to help with keeping him healthy, there is a vitamin mix called the Mito cocktail that other VWM patients take also there is an antibiotic that he could take all winter that would help as well. We worry about school but don't want to pull him from that if we can. We meet with Dr. Perlman here in about a month and will get a game plan in place for the coming winter.
For those that like to see what our day to day life is like just posted the next vlog video today
Research Update:
Last weekend grandma and papa Mealhow attended the United Leukodystrophy Foundation conference (VWM is a form of Leukodystrophy). This is the 1st conference Team Reed has attend and it was a great opportunity to talk to the doctors and meet other families that understand what you are going through.
There are only 2 VWM research projects in the world, one in Tel Aviv run by Professor Orna Elroy-Stein (center in the picture with my mom) and the other in Amsterdam run by Dr. Marjo van der Knaap. We are excited to share that both projects have made real progress and have identified compounds that might actually stop the progression of VWM. Prof. Elroy-Stein's research is funded for the next year thanks to the hard work of Saving Chloe Saxby and donations that other VWM families including Team Reed have made. Dr. van der Knaap's, on the other hand, has been put on hold for a year while they submit grant applications and wait for the money to come through, assuming the applications are successful.
There are only 2 VWM research projects in the world, one in Tel Aviv run by Professor Orna Elroy-Stein (center in the picture with my mom) and the other in Amsterdam run by Dr. Marjo van der Knaap. We are excited to share that both projects have made real progress and have identified compounds that might actually stop the progression of VWM. Prof. Elroy-Stein's research is funded for the next year thanks to the hard work of Saving Chloe Saxby and donations that other VWM families including Team Reed have made. Dr. van der Knaap's, on the other hand, has been put on hold for a year while they submit grant applications and wait for the money to come through, assuming the applications are successful.
Waiting a year for funding is not an option. A year is life or death could be life or death for these kids. Neither of these treatments will be able to reverse any damage that has been done, meaning we need to rush this research as much as possible to preserve what motor skills our children have left.
So now it is up to the families to raise the money to keep these projects going. This is where we need as much help as we can get. We need to raise $1 million in the next year.
We have had such amazing support from our community and surrounding community, Reed is so loved! This news coming out of the research is so amazing and hopeful for us, something that we truly believe Reed will be a part of. Thank you for all the past support and the continued support will never be enough for the gifts we have been given by all of you that support Team Reed. We are always looking for ideas anyone who has fundraising or publicity ideas or can help in any way, please message us.
We have had such amazing support at our Team Reed events this year and we will continue to fight and bring awareness and hold fundraisers when we can, please consider supporting two upcoming events, Reed Havlik Ride & Drive (Official) Benefit on October 7th, even if you don’t want to drive in it consider coming to Bucketz that night, October 21st Family Fall Festival for Reed, many great activities being planned, Tessa Cole with Sackett Photography will be holding mini sessions for your little ones in their Halloween costume, bake sale, pumpkin painting, purse sale, vendors, and many more things. If you can’t be there and would like to help out still consider buying a Team Reed shirt at https://onemission.fund/support/team-reed/
We understand that not everyone can help, support or participate but the most important thing for us is telling Reed’s story and awareness of VWM, so we ask that you please help us to raise awareness by share Reed's story, talk about him, share his page, share his picture. Awareness is key here you never know who might be listening and how they might be able to help in some way. Because of the rarity of Leukodystrophy and further yet Vanishing White Matter disease we know that people have never heard of it and people don’t know how close we are to curing an incurable disease. Someday soon we hope that our communities will be able to say we helped and contribute to curing the impossible! How great would that be!
Neither project is a guarantee. Even if we manage to raise the money time is a factor in the treatments, but have a huge amount of hope in this we have hope that maybe, we won't have to bury our son. There is finally a glimmer of light at the end of the tunnel. Without this research Reed's future is certain, with it, he might just have a future.
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