I don’t know Eleora Toomey or her family. I do know the facilities supervisor at my company, though. He brought Eleora’s story to my attention at work one day, and once I heard it, I knew that I had to find some way to help. We’re collecting donations for Eleora’s wish: a trip to Atlantis to swim with the dolphins. We’re all on borrowed time, but Eleora is especially so. She’s seven years old, which is four years longer than she was expected to live. It’s very important that she gets her wish. If you’d like to “twonate,” click here. Use code “RIDE2.”Your donation will go to a secure PayPal account. No funny business here. If you’re athletic and would like to get a team of riders together for the 50/100 mile bike ride to raise money on her behalf, stay tuned: I’ll be posting more information on the ride as we continue our preparations.

Here is Eleora’s story, in her mother’s words.

Eleora’s Wish

Eleora was born on 8/27/2002 with multiple heart defects, the most concerning of which was a VSD (Ventricular Septal Defect). For her first six weeks we worked very hard to keep her from heart failure. When we could no longer keep her out of the hospital she went in for open heart surgery at the weight of only six pounds. During this long stay, we got the results: Eleora was missing a part of her Chromosome #9 and in its place she had an extra piece of Chromosome #13. This condition is called Partial Trisomy 13 with a Partial Deletion of 9. We were told that 98% of kids with conditions like hers didn’t live past the age of three and that Eleora would never function as anything more than a newborn.

Just in time for the clock to strike midnight for New Year 2009, Eleora had a Grand Mal seizure. This was especially serious because children with Eleora’s condition are prone to seizures and because it is usually a seizure from which those children succumb. When we started asking the doctors what this meant for Eleora, all they could tell us was that they had never seen a child with her condition live this long. That she is still alive is a miracle.

Today, Eleora is a happy and loving child who gets where she wants to go by rolling. She has also taught herself to sit up. Her smile makes our hearts dance. Eleora gets three  therapies a week after she gets home from school and five different therapies in school. She no longer has a feeding tube, but she does have to get all of her food thickened. Eleora has reflux, kidney reflux, slow gastric emptying, some small heart problems, neurological problems/seizures, and multiple visual problems. She is hearing impaired, hypotonic, and severely mentally and physically handicapped.

Several years ago, we took Eleora to Sea World. She tried to jump in with the stingrays.  Eleora loves aquariums and sea animals which is why we have chosen “swimming with dolphins” for her Make-A-Wish.