Leon is 9 years old and he has Asperger Syndrome /High Functioning Autism. He is an extremely bright boy with big ideas and an even bigger heart.
One of the many wonderful characteristic of Asperger’s is Determination, and he’s got plenty of that. When Leon has is heart set on something, he cannot be derailed. When Leon was in 1st grade, he watched a video presentation in school about St. Judes Children’s Hospital, on that day he decided he wanted to help the kids of St. Judes, because, in his words, “I can help kids who are really, really sick” . He then told me he wanted to cut his hair
(which was Mohawk at the time). When I asked him why, he said “because, I want to donate it to the ones that are bald”.
Leon has not cut his hair since and that was back in 2008. In that time he has been teased, mocked, and bullied by other kids. He is often mistaken for a girl. But Leon takes it all in stride. He simply explains to those patient enough to listen, “ I am not a girl, I am a boy. I am just growing my hair to donate to St. Judes Kids”.
In 2011, we found out that there was no guarantee that his donated hair would go to a St. Judes Child. In fact it was unlikely. This did not sit well with Leon at all. He was very upset in fact. Although he knew that his hair would still go to a good cause, it was the children of St. Judes and their story that had touched his heart.
This is why he began hosting the “Leon’s Locks for St. Judes Kids Fundraiser”. It was important to him that he still do something for St. Judes Kids. Leon set his goal quite high, at $5000. We know it is a long shot but we have always taught him to reach for the stars and to believe in himself.
We worked together as a family to get donations where ever we could. His father and I reached out to our contacts via email, Facebook, and this website. We also had cards made up for Leon to give out when the opportunity presented itself.
He gave them out to friends and their parents, at birthday parties, and communions. We carried them with us where ever we went. We even had a pin and a T-shirt made that said “ask me about my hair”.
Then when asked he could tell his story and give out a card. This worked out very well, because Leon did not always feel comfortable approaching people he did not know. But when asked he was always more than happy to tell his story about why his hair was so long. He spoke to people on the train, in restaurants, and we even hung out in Times Square for a while, giving out information cards.
.Both his dad and I are very proud of how much bravery and confidence he has shown when approaching and being approached by others. We love how much partaking in this, has helped him improve on his social skills, something that is greatly hindered by his Asperger Syndrome.
Being a part of this fundraiser has helped us grow in so many ways, both individually, and together as a family.
Tomorrow, July 7 2012, we will celebrate with our friends and family at our Annual BBQ that we have every year in July. At some point in the evening Leon will cut his hair for donation to “Locks of Love”. And while we are happy to report that since Leon began this fundraiser in March 2012 , he has raised $1385.00; we hope to continue in spreading the word and getting more people to donate to his fundraiser for St Judes Children’s Research Hospital.
Folks can donate with a credit card via this link https://waystohelp.stjude.org/sjVPortal/public/event/page/displayEventPage.do?sectionStyle=subMenuFour&eventId=310924&programId=2002
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