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Saving Sadie Rae

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Wednesday, October 12, 2016

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MONTGOMERY, North Carolina, USA - Barely 7 months old, Sadie Rae Haywood, with her big twinkling eyes and a smile that would light up any room, seems like a perfect and happy baby. Whether she has a pumpkin hat on for the arrival of autumn or is wearing a bow; her smile belies all she has gone through in her short life, or the challenges that lie ahead for her and her parents, Jason and Ashley Smith Haywood.  Sadie has been diagnosed with Sanfilippo Syndrome, a rare disorder that robs children of life by their teenage years. Only one in 70,000 children is diagnosed with the disease, leaving parents of those children with few options for treatment, as there is not much funding available for research.  After a 37.5 week healthy pregnancy, Ashley gave birth to Sadie May 8. From the moment she was born complications began and she was immediately airlifted to Levine Children’s Hospital in Charlotte where she was put on a ventilator due to respiratory distress syndrome. As a possible result of the ventilator, Sadie developed IVH Grade III, a serious brain bleed. As Jason puts it, “This could be considered common in a premature birth, but with Sadie being considered full term it was sorta uncommon. We were kinda stumped and the doctors were stumped as to why it was happening to her.”

With the doctors unsure what was causing the complications and an extended hospital stay, Jason and Ashley had time to think of anything that they could suggest to test Sadie for. Jason, who has a distant cousin with Sanfilippo Syndrome, mentioned that the doctors might want to test for that just to rule it out. After spending her first 73 days in the hospital, Sadie was finally able to come home May 20. The doctors had stopped the brain bleed by surgically implanting a shunt to fix the problem. All her issues had subsided and Sadie was home, “She was progressing really well, and after all the stuff she had been through. We’d had the test (for Sanfilippo) done just as a precaution, but I was never really worried about it,” Ashley said.  On June 27, just over a month after being home with their baby, the Haywoods received the call informing them that Sadie had been diagnosed with Sanfilippo Syndrome. “That was really hard,” Jason said, “Over that month at home she was making all these gains.” Ashley added, “In the back of my mind I thought, ‘She has already been through enough, this can’t be too.’ When we got the call it was tough.” Ashley said that call was probably the toughest thing they went through, even with the brain bleed, all the surgeries and airlifting. 

Instead of resigning themselves to this fate, the Haywoods steeled their resolve and have quickly become champions for a cure for Sanfilippo. Jason said, “We knew even leading up to the phone call saying she had it, they didn’t know that much about Sanfilippo. We only knew what we had heard about from my relative. Beyond that we just had to start finding out about it, talking with people about it.”  They have set up a Facebook page www.facebook.com/SavingSadieRae/ as well as a websitewww.savingsadierae.org/ and GoFundMe page www.gofundme.com/savingsadierae where you can donate to help fund research for the cure. There are also T-shirts and jewelry available to purchase with proceeds going to help fund research. 

“We are going to Boston this week to meet with a doctor that is doing a study that is actually like a bone marrow transplant,” Ashley continued “It is really invasive Sadie would have to go through chemotherapy, so we really don’t want that but there aren’t a lot of options. So you take what you can get kind of thing.”  The biggest advantage the Haywoods have in the fight is how early they were able to get Sadie diagnosed. “Usually kids are 3 or 4 before they find out. That is the biggest thing we have going for Sadie is that we were able to find out early. We are able to do things like physical therapy, occupational therapy, speech therapy and all those things will do her good,” Jason said pointing out the only time children are usually diagnosed so young is if they have siblings with Sanfilippo. 

Sanfilippo is a degenerative disease that rapidly progresses in children; most by the age of 10 are confined to a wheelchair and cannot talk or feed themselves. Though it affects every child differently, there have not been enough studies to have a sure fire way of knowing what to expect. The Haywoods have met one child with Sanfilippo, who is also from North Carolina, who shows little signs of the disease at 11 years old. They said she still goes to school and only has some hearing issues, but doesn’t even know she has the disease; but they also noted children as young as 6 or 7 have died from complications of the syndrome. 

After the diagnosis the Haywoods discovered that not only is there a mutation for the disease in Jason’s family, but Ashley’s too. Jason explained, “Both of our mutations are fairly common within the disease so we feel like Sadie will be on a fairly common schedule for it’s progression. After the age of 4, seizures could start and from what we know, the seizures can be pretty bad. Around age 5 or 6 there will be extreme hyperactivity and she will start having difficulty speaking. Around age 10 she could lose the ability to walk. Her motor skills will get progressively worse. It’s a very rapid disease. Our time is so limited so we are doing all this and trying to push for everything.”

Jason noted finding out about Sadie’s diagnosis at such a young age was also difficult to process “With the complications after birth, it’s kind of like a catch-22. Had that not happened we wouldn’t know. We would have never gotten her tested. We have thought about it both ways, would we have wanted to have her for 3 years not knowing the inevitable. But I think the way it is now I wouldn’t trade it because we are capturing more of these memories and taking less of it for granted.”  Ashley pointed out, “At 7 months we don’t know how her progression is going to go, but probably a fourth of her normal life has already passed. So we try to live each day to the fullest and do everything we can.” The Haywoods are already making plans to visit Disney World when Sadie is 3 so she can experience as much life as possible before she starts regressing. 

The Haywoods pointed out how supportive their families and employers have been, as well as the community in Montgomery County. “We couldn’t have asked for a better community and people coming out and supporting us. It makes you grateful to live in a smaller area. Love Joy United Methodist Church went above and beyond with a benefit for Sadie. There is a couple that is doing a gun raffle for us I’ve only briefly met them twice, and she contacted me and said, ‘My husband just bought a gun and we’re going to raffle it for you.’” Jason added, “It is amazing how thoughtful people are.” The Haywoods have been meeting other families with Sanfilippo children to find out more about the disease. One of those families, Glenn and Carol O’Neill, of South Carolina, operate the Cure Sanfilippo Foundation and have been a huge asset to the Haywoods. The O’Neills’ daughter Eliza has Sanfilippo and they were able to produce a video that went viral and raised over $2 million to go into research for a cure. The O’Neills have produced a second video with Sadie in it as well. 

With the proceeds of the video, Eliza was the first child to go through a gene therapy trial and has shown promise in the results. Jason said of the study, “The gene therapy is the most promising thing they have going now. It has worked in mice and is by far the least invasive procedure there is. That is what we are all hoping to get our children in, but there are so few spots in the study. So we are pushing awareness so we can get the funds necessary.” Ashley added, “ There is a cure pretty close and I think it is definitely in our lifetime. It could be from one of the studies that is already underway or about to start up, but it is so hard to get the funding.” “We have been to one meet and greet with other Sanfillipo families,” Jason continued “They had a meeting at my cousins house where they did the shoot for the second video. There were seven Sanfillipo families there. Obviously we were the youngest.” Ashley said, “This was only three weeks after we found out (about the diagnosis). We didn’t know much about it. It was very shocking.” She laughed, “All the parents there were very fit because they always have to be running around chasing there children,” but continued, “That was hard to see that because I didn’t know Sanfillipo kids were hyperactive. And they were very hyperactive. Even if you don’t have kids that have issues, it is hard to see others that have to deal with that. It was tough. The other parents were so surprised that we came. They said they hated we had to see it so early on. But we needed to see it and to know what was going to happen.”

“It was very eye opening,” Jason said, “To know our perfect little girl was going to progress that way, it was very hard. All those families were so strong; I guess we will eventually evolve into that. They were so good with the children. Being first time parents it will be hard, it will be a learning curve for sure.”Ashley added, “We know we have to live each day and do whatever Sadie wants because she deserves it. For the few years that she is going to know, she deserves it. She gets everything she wants.”

Source: Montgomery Herald
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