While opening mail filled with hair donations as well as hair piece measurements form the children we serve—we opened this letter from Cheryl, Emily’s mom.
We’re so thankful to share this letter with you, and we hope it inspires you as much as it does our team.
To Wigs for Kids,
Emily is a smiley-face, spunky 9-year old girl who reminds us all to live to its fullest and to always have faith.
When Emily started walking as a toddler, we noticed that she had a wobbly gait and lacked some muscle coordination. Sadly, this observation led to a diagnosis at the age of two of a rare, genetic neurodegenerative disease called Ataxia Telangiectasia (AT). As the AT disease develops, children like Emily lose their ability to write, walk, and their speech becomes slowed and slurred.
The disease also ultimately results in a severely weakened immune system and a high predisposition to respiratory complications and/or cancer, ultimately making the disease terminal for most children before they end their teenage years.
According to The National Institute of Health, only about 1 in 100,000 children are at risk for developing AT, with some medical websites stating that only about 500 people suffer from Ataxia Telangiectasia. With AT, there is unfortunately no cure and no effective treatment. Emily’s dad had a nephew with the same diagnosis who died at 16 from respiratory complications.
With each passing year, Emily has slowly lost more and more of the every day abilities that many parents take for granted in their children, such as running with their friends, partaking in activities that many kids her age like, or enjoying easy, casual meals with family (it has increasingly been more difficult to eat independently due to worsening intention tremors). At present, this little girl who once smiled with beaming pride on stage at her dance recitals can no longer walk unassisted.
What’s even worse, she has lost most of her hair in just a matter of 2 weeks, and this happened in the latter part of May and beginning of June this summer, just before her 9th birthday. With all these recent changes in her physical well-being, she could not help but ask, “Mom, is this what it really feels to be 9? I wished I was 8 again. I really miss my old hair.”
Over the years, Emily’s gone through countless appointments with doctors, therapists and specialist, and monthly IVIG plasma infusions to help maintain her immune system, with her veins hooked up to an IV machine. This is the only help we could give her so to prevent any respiratory infections, which can take her life.
Emily is a bright little girl who entered 4th grade this school year, and she is fortunate to have supportive staff in school. Yet she is worried about what her friends will say or how they will react upon seeing her without any hair. We have reassured her that she is indeed beautiful inside and out, and helped her cope with this negative change by having her try accessories like cute hats and head bands. Yet she still longs for the day that she will get her “old hair” back and it’s quite heartbreaking to see her go through this effect from having alopecia, in addition to the brutal health challenges she has with having AT.
What we appreciate the most about Wigs for Kids is their sincere compassion and understanding. The wig application process was not as tedious as that of other companies.
When I spoke with one of their representatives over the phone, I felt a sense of empathy from this kind lady. She was informative and supportive; dor once in a very long time, I felt that there can actually be a solution for Emily’s condition of not having any hair. This gives us a little ounce of hope for the problem on hand, a much different feel in comparison to the many times we’ve been told by medical doctors that there’s no cure for her neurodegenarative illness.
As we sat at the Beauty A La Carte salon to get her head measured for the wig, I sensed my daughter’s excitement, and my husband and I were filled with joy.
Raquel, her wig specialist, is very courteous and kind. As she showed many pictures of kids who donate their hair for this cause, I was overwhelmed by the kind-heartedness that even our young people have to others who could surely use their help. I just wish that the blessings that Wigs for Kids, and the many individuals who support the cause, will come to them ten times over.
We are very grateful for the gift granted for our little Emily. She is indeed one of the strongest, bravest, and sweetest little girl you could meet. So much of the goodness of the world can be seen in her simple smile. Despite of her own struggles, she is sympathetic of others and face each challenge with optimism.
This wig will give her the confidence to once again live life the best way she knows how. Thank you so much.