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Children with Ataxia NAF Children Booklet 2015_Layout 1 7/13/15 12:58 PM Page 1 Children with Ataxia National Ataxia Foundation NAF Children Booklet 2015_Layout 1 7/13/15 12:58 PM Page 2 ©2015 National Ataxia Foundation. All rights reserved. NAF Children Booklet 2015_Layout 1 7/13/15 12:58 PM Page 1 Children with Ataxia Table of Contents Introduction ................................................................................ 1 Alaysha’s Story ............................................................................. 2 How You Can Help ..................................................................... 3 Angela’s Story .............................................................................. 4 Cameron’s Story .......................................................................... 6 Liesel’s Story ................................................................................ 7 Maya’s Story ................................................................................ 8 Olivia’s Story ............................................................................. 10 Handwritten Note ..................................................................... 12 Yasin’s Story ............................................................................... 13 In Memory ................................................................................. 14 NAF Is Here to Help .................................................................. 15 About NAF ................................................................................ 16 Introduction It is estimated that 150,000 But there is also courage, hope, individuals in the United States and a commitment to making the are affected by ataxia. Sadly, most out of today. many of those who are affected The stories presented in this are children. booklet are the stories of children Families who have a child with with ataxia. Parents and family ataxia are forced to adapt to the members have generously pro- constant change and uncertainty vided these stories to share their of this disease. The impact from difficult and emotional ataxia the disease can be felt not only journey. They offer a candid by the child, but by the family perspective on how ataxia has as a whole. There is struggle, forever changed their lives and helplessness, and heartbreak. on their hopes for the future. Children with Ataxia 1 NAF Children Booklet 2015_Layout 1 7/13/15 12:58 PM Page 2 Alaysha’s Story Story provided by her Mom n February 4, 2015, told the neurologist what I OAlaysha, my eight-year-old thought; he agreed so we had the daughter, was diagnosed with test done and sure enough she has ataxia telangiectasia (A-T). When A-T! she was a baby they tried to I was kind of prepared for this diagnose her but couldn’t figure but it’s still like a nightmare come it out, so we left with a general true. As soon as we knew what diagnosis of ataxia. As she grew it she had we decided to start fund- even seemed like she was growing raising for Alaysha so that she can out of this wobbling. She met all get to experience as much as her therapy goals, so we just possible in her short life. went on living life until this school Her older brother Colton did a year. fundraiser at his school and raised Her walking and talking started $600 for the National Ataxia getting worse so I felt it was time to go to the neurologist and try Foundation. He also got us on again for a diagnosis. While wait- the news to bring awareness of ing for this appointment we had ataxia to our city. to get Alaysha a walker. We started a GoFundMe.com I also started doing my own personal fund-raising website and research on the different kinds of put donation jars around town. ataxia. I found ataxia telangiectasia Unfortunately some of them were and felt as if I were reading a stolen last week, but karma will horror story about my baby. And take care of that. I knew this was what she had. I We got Alaysha her own post 8 2 National Ataxia Foundation NAF Children Booklet 2015_Layout 1 7/13/15 12:58 PM Page 3 office box so people can send busy, filled with doctor appoint- cards and things. She also has a ments, therapy, worries and fear. Facebook page called “Hope for But my daily goal will never Alaysha” where people can talk to change: that is to make sure her. She posts lots of videos and Alaysha goes to bed with a smile pictures. on her face. Life isn’t always fair to The only way I can deal with everyone but we take the hand this horrible diagnosis is to only we’re dealt and day by day do the think of today. Alaysha’s tomor- best we can. row isn’t promised. She is the I would never be able to deal happiest child. She always was with all of this without the sup- and still is. Alaysha is the most port of family and most of all my thoughtful child I’ve ever met; she soul mate David. We were always thinks about how things brought together for a reason and will make others feel. Her smile now I see why; he is a wonderful can light up a room. Everyone dad to Alaysha. Something she knows and loves Alaysha. I’ve has never had. We have a few always taught her that everyone is challenges right now as her A-T is different and she takes it to heart getting worse. She will need a so it doesn’t bother her that she is wheelchair soon so we desperately different. I’m so thankful for that. need to get her in a one story Life is a lot different now. We house. A-T is a horrible condition used to have a very laid-back, but we do our best to not let it rule our lives. easy-going life. Now life is very v How You Can Help As you read the stories of support, education, and research. these children and their parents The impact that your donation who live with the challenges of has is profound and far reaching. ataxia, please consider making a Research gives hope to these donation to the National Ataxia families, that one day there may Foundation. be treatments and a cure for Established in 1957, the NAF their children. is dedicated to improving the Donations can be made lives of persons affected by through our website, www.ataxia. ataxia and their families through org. Thank you. Children with Ataxia 3 NAF Children Booklet 2015_Layout 1 7/13/15 12:58 PM Page 4 Angela’s Story Story provided by Angela’s Mom and Dad e have three children, all in a wheelchair that we push be- Wbeautiful girls; Angela is cause she is not able to operate it. our middle daughter. Our world Harness straps are necessary at all was turned upside down when times. Ang cannot support herself Angela was diagnosed with Spin- sitting or standing. A headrest ocerebellar Ataxia type 17. I can must always be in place otherwise still recall how the oxygen left my her head falls backwards and she is brain and the sick feeling in my not able to lift it up on her own. stomach on that painful day. A Choking occurs quickly. wonderful nurse had taken Ang Vomiting had become a very for a walk in the hospital as we sat serious problem for Angela. We numb in the doctor’s office while tried for months to figure out why being told the devastating news of this was happening. We were our daughter’s future. The doctor scared. Losing Angela certainly told us to be strong in front of our crossed our minds during this children and cry at night when difficult time as she dropped they were in bed. down to 69 pounds. We elimi- Angela was 15 years old when nated foods, added foods but she was diagnosed with SCA 17. nothing stopped the vomiting. Today she is 23. She does not seem We decided to take Angela off all that old though. The progression medications, the weaning process has caused her to no longer be able took quite some time but eventu- to do most things. It’s almost as if ally the vomiting completely her life stopped in its tracks. An- stopped! She now also sleeps gela cannot walk anymore, she is through the night or is at least 8 4 National Ataxia Foundation NAF Children Booklet 2015_Layout 1 7/13/15 12:58 PM Page 5 peaceful. Unfortunately a large Angela will try her best to nod for pressure wound near her tailbone us. But there are times when she’s opened up causing Angela great just not able to do that and times distress. The wound became in- when we are not able to tell if fected. We added an air pressure it’s a “Yes” or a “No.” Angela’s mattress to her bed, a ROHO pad losing her ability to talk has been to her wheelchair, tissue nutrients one of the hardest things. Is she to her diet and Angela was reposi- hungry? Is she in pain? Is she cold? tioned every 30 minutes. It took a Is she sad? Is she scared? We can little over a year for the pressure only hope she knows we are try- wound to completely heal. This ing our very best to give her what was an incredibly painful time for we think she needs and wants. Angela and also for her family. Angela is now very stable; she is It is necessary for us to feed tough, she’s a fighter. Better yet, Angela. Each meal she is happy and takes one-and-a- likes to be near us. half hours. The Her smile is as food needs to be Angela is“ now very beautiful as ever! chopped up very stable; she is tough, We continue to fine and have a wait for a cure for high calorie count. she’s a fighter. Spinocerebellar Every morning her Ataxia. We are so dad gives her fortunate to have yogurt, cereal with whole milk,”so many loving and dedicated Juven (which promotes tissue doctors, nurses, counselors, growth and strength), Karo syrup researchers and all of the others and of course ice cream.
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