We are thrilled to be able to share with you some of the grants we have been able to give over the past years along with notes from their families… all because of YOUR help!
Thank you so much for helping us with registration costs for the Phelan-McDermid Syndrome Foundation’s 2012 International Family Conference and Scientific Symposium! We have been waiting to attend this conference since our son, Cree, was weeks old (he is now 2; the biennial conference was last held right after his open heart surgery and there was no way we could attend). Phelan-McDermid Syndrome is rare, and few doctors have ever heard of it. The majority of the information we have comes from PMSF and from the Facebook group of parents who offer support and guidance. This conference allowed us to begin planning more fully for Cree’s future utilizing the information gathered from workshops and roundtables, and afforded us the opportunity to finally meet many of the parents who have been instrumental in our day-to-day survival and who we now look at as family. Your foundation’s grant was appreciated more than we can fully express.
We have an amazing seven year old boy named Josh. Josh is our miracle baby and has been through so much in his life. He was born in renal failure and was given less than a 5% chance of survival. Josh has had quite a journey including many surgeries. More than we can count. Josh’s biggest surgery was his life saving kidney transplant which he had when he was just shy of two years old. Until the transplant Josh had daily dialysis to clear his body of the wastes his kidneys were not able to clear. He has many challenges in his everyday life, including 13 medications (some of which are steroids and anti-rejection medications that help sustain his life), breathing treatments and many doctor appointments. Josh’s newest challenge is a recent diagnosis of Asbergers. We were told he ha PDD NOS until recently. We have enrolled Josh in some Autism programs and are working on therapy and other resources. We recently searched far and wide to find a puppy companion for Josh to help him with his great relationship, behavior and social needs. After looking at least 11 dogs we found a great match for Josh and for the first time he has shown love and compassion for an animal. We welcomed Baby Kyle, a boxer puppy, into our home with happy tears. We are now seeking training for her to be a Service Dog for Josh and can’t wait to have Michelle from Mannerly Mutts bring her expertise into our home and help us train our new puppy. She can help train Baby Kylee to be aware of some of Josh’s many medical, social and behavior needs. What a blessing, however we need your help.
JRF took care of our daughters changing table “gift”. I know it’s considered a “grant”, but I call it a gift because that’s exactly what it is, a wonderful gift!!!! Our daughter Erin now has a stable and safe place to be changed, dressed and groomed every day and we can’t thank the organization enough for this wonderful chance for our daughter to have something that we would not have been able to give her on our own. And thank you, Lisa, for helping us through this process as it was our first time. You are all doing an amazing job & words can’t describe how much this means to us. I’m sure other parents would agree that through Johnny’s legacy there is a great hope!
Thank you all again for the wonderful works that you do.
I wanted to send an e-mail to Thank you from the bottom of our hearts. We cannot express how grateful we are to you and the Johnny Rainbow foundation for granting our wish of a new high chair to support and safely hold our daughter during her tube feedings. She absolutely loves it and it will be a huge relief for our family. Thank you again.
To our surprise today was a UPS delivery containing a weighted vest for our autistic son and its all because of you.
We are humbled and grateful for your very generous gift.
Thank you from the bottom of our hearts
I wanted to send you a picture of my son Nate as “sunscreen man” during Camp Bournelyf’s summer show. We really appreciated the grant money from Johnny’s Rainbow. Nate loved the camp…and the show. He gained much independence this summer because of this camp.
thank you once again.
Emma started horseback riding in June 2012. Her riding will help strengthen her trunk muscles. Our hope is that she will eventually be able to sit independently.
Jamie is 9 years old, funny, and bright. The summer is difficult since we can’t find a camp that is appropriate for her. Going to the pool is her way of “leveling the playing field” with other kids. While it’s not a formal form of therapy, I feel it’s both physically and mentally beneficial for Jamie.
Here is a picture of Nicky enjoying the iPad with his big brother! The most unexpected bonus of this iPad is that these 2 have something to bond with!! My oldest son couldn’t find a way to connect with Nicky before, which, as you can imagine, has been very hard. Not anymore! Nicky also loves the Talking Tom cat app. It repeats everything you say which really has been motivating him to say more words!! Thank you so much!! We are forever grateful!
On September 11th, the Hatzell family donated $100 to Johnny’s Rainbow Foundation. The family raised this money by selling hotdogs at a community yard sale. The Hatzell family donated to show their appreciation of Johnny’s Rainbow Foundation, who had previously provided a grant that went toward the purchase of their son, Ian’s, life-saving seat belt harness. A special thank you to the Hatzell family for giving back to Johnny’s Rainbow Foundation!
Because of the rainbow grant, Melody received this spectacular adult trike for Christmas! As you can see, she is delighted with the bike, the freedom and independence that she has to ride it at her leisure. She is still learning the “ways of the road” so until those skills are mastered she rides mostly with supervision. She can sit proudly atop her trike as we cruise through town - not feeling embarrassed riding a two wheeler with training wheels. She loves to ride while her sisters scooter or ride next to her – and no longer needs to ride behind Sam on a third wheel. She is especially thrilled with the basket and all the things she can tote around but I think her favorite thing is the bell!
Thomas is thoroughly enjoying his ipod touch. He loves to watch all his favorite videos on youtube and look at his favorite pictures on google. He could not be more amazed or happy to have such a wonderful device. He also likes to listen to his favorite songs and watch his favorite movies. Thank you so much for this great gift!