Fletcher family sponsors fundraiser and raises awareness
Fundraiser set for Sept. 14 for Pitt Hopkins Research Foundation
The Bedford Times-Press, Iowa
By Nicki Lock, August 21, 2013
On Saturday, September 14 a walk will be held in honor of Ian Fletcher, son of Trevor and Jessica Fletcher, at the Bedford High School Track to raise funds for the Pitt Hopkins Research Foundation. The walk will start at 9:30 a.m. with registration starting at 9:00 a.m. Early registration is taking place now, online at www.inspiredbyian.myevent.com. The cost to participate in the walk and receive a T-shirt is $25 for adults.
If an adult would like to register and not receive a T-shirt the cost is $15. Kids 18 and under walk for free. T-shirts will be available for sale until September 1 at a cost of $12.50.
Ian Fletcher was diagnosed with Pitt Hopkins Syndrome in 2008 after having genetic testing done. Pitt Hopkins Syndrome is a severe neurological disorder. Only about 250 people in the world have been diagnosed with Pitt Hopkins Syndrome. Pitt Hopkins Syndrome is caused by an abnormal chromosome.
When Ian was six months old, Trevor and Jessica noticed he was not reaching developmental milestones like he should be. After visiting with their doctor, they were told that some kids just don’t develop as quickly as others. Then when he was eight months old they went back to the doctor and again were told that some kids don’t develop as quickly as others. This went on until Ian was about a year old. At 13 months old Ian started having seizures. Trevor and Jessica took him to Blank Children’s Hospital and after having scans done of his brain, Ian was diagnosed with hydrocephalus. Hydrocephalus is when there is excess fluid on the brain. Ian was then rushed to Iowa City for surgery; a shunt was put in to drain the excess fluid.
After Ian was still not showing much progression, they decided to have genetic testing done. When Ian was diagnosed with Pitt Hopkins Syndrome, the doctors could tell them what he had but not much more about it. Ian was one of the first 10 people in the world to be diagnosed with Pitt Hopkins.
Since being diagnosed, Ian has been hospitalized multiple times, had some minor surgeries and a lot of therapy. Now, 8 years old and ready to start the third grade, Ian attends Bedford School and really enjoys being around his peers. Ian has an aide, Teri Pope that helps him through the day. Trevor and Jessica are very appreciative of Teri’s help and the support and help of the staff at the Bedford School.
The Pitt Hopkins Research Foundation is working hard to raise funds to help with research. Scientists at University of Alabama and Harvard are currently researching ways to treat and eventually cure this syndrome. The group of parents have worked hard to raise money, but need your help to keep the research going. The scientists doing this research are using mice models to try and reverse this syndrome.
“We feel so blessed to have the support of the community,” commented Jessica. Trevor commented they knew that there was support for Ian in the Bedford community but the multitude of the support is phenomenal.
Another fundraising activity going in Ian’s name is Fedoras for Ian. Godfather’s in Bedford started a fundraising campaign on August 14th. On the inside flap of each medium or large pizza box there is a fedora hat. Cut that hat off of the box and drop it in the collection box at Godfather’s. They will donate 25 cents for each hat collected. These will be collected until September 18. If Godfather’s collects 1,000 box hats, they will double the money and donate $500 to the Pitt Hopkins Research Foundation.
The Fletcher family scheduled the walk for September 14 so they can hopefully present their donation in Ian’s name to the research foundation on September 18, Pitt Hopkins Syndrome Awareness Day.
For more information about Pitt Hopkins Syndrome and the Research Foundation visit www.pitthopkins.org. You can also visit Ian’s Facebook page athttps://www.facebook.com/inspiredbyianfletcher.
Raising awareness about Pitt Hopkins disorder
Raising awareness about Pitt Hopkins disorder – KMAland.com: Local
Posted: Wednesday, September 4, 2013 3:23 pm, by Nick Johnson
(Bedford) — A local Bedford couple is doing her part to raise awareness for a severe syndrome.
Known as Pitt Hopkins Syndrome, the disorder causes seizures, breathing problems, and gastrointestinal complications in kids. Trevor and Jessica Fletcher’s son, 8-year-old Ian, suffers from Pitt Hopkins. A long-time Taylor County resident, Jessica says the disorder is very rare.
Ian was one of the first ten children diagnosed with the syndrome, in 2008, and there are only 250 people in the world that have been diagnosed at this point. However, Fletcher says with new technology, there may be more who were misdiagnosed in the past who may now be correctly diagnosed with the disease.
Fletcher says there are signs parents should look out for. For them, when Ian was 9 months old, they noticed he wasn’t hitting the milestones that he should, and if your child is experiencing the same thing, to see a doctor. Unfortunately, at the time, Fletcher says Ian was misdiagnosed and they didn’t follow their instincts.
She says each case is different, but follow your instincts. Ian is now 8-years-old, and a 3rd-grader at Bedford schools. Fletcher says he continues to get better. He has been walking for the past three years, and while he doesn’t talk, they have been teaching him sign language and other forms of communication. He understands many things, but has difficulty communicating. Overall, Fletcher says, he’s a very healthy little boy.
The official awareness day for Pitt Hopkins is September 18th, however, they’re having an event a little earlier in the month. On September 14th, they are having a walk at the Bedford School track beginning at 9:30 a.m. with registration at 9:00 a.m. The event will not only raise awareness, but also money for the continued fight.
Cost to participate is $25 for adults with a t-shirt, $15 for adults without a t-shirt, and kids 18 and under walk free. And Godfather’s Pizza in Bedford is also fundraising until September 18th.
Find out more here
Raising awareness about Pitt Hopkins disorder – KMAland.com: Local
Jessica Fletcher talks about her sons’ battle with Pitt-Hopkins disease
Dean & Don | Posted: Wednesday, September 4, 2013 10:22 am
Jessica Fletcher talks about her sons’ battle with Pitt-Hopkins disease, click on link below for audio:
http://www.kmaland.com/kma_programs/dean_don/audio_135895d1-894b-5e6f-b7eb-76eb9a908bbe.html
