rayleechristian
Christian's Make A Wish
- Joined
- Mar 10, 2011
- Messages
- 90
Ok, so here we go!!! This is Christian's story so let me introduce you to him first!!
This is Christian!!! Handsome booger isn't he??
Let me tell you a little about Christian to get us started. Christian was born on October 1st, 2001. My pregnancy went really well except that he was breech and had to be a c-section. This is me!
Here is Chris, my sweet hubby and awesome daddy!!
He had a breathing complication for about the first 30 minutes of his life but recovered quickly. He was our perfect baby! Sweet, bright eyed, slept through the night, nursed like a champ!!!!! He was so sweet and funny! He was always the life of the party and still is!! His infant and toddler years were great and went off without a hitch, pre school, soccer team, first girlfriends! He, He!!
This is his brother Raylee!
He was 5 when Christian was born and is now 12. Let me back up a little bit here. When Raylee was 3, he was diagnosed with duchenne muscular dystrophy. One of nine types of muscular dystrophy, a group of genetic, degenerative diseases primarily affecting voluntary muscles. The cause is an absence of dystrophin, a protein that helps keep muscle cells intact. The onset is early childhood 2-6 years. The symptoms are generalized weakness and muscle wasting first affecting the muscles of the hips, pelvic area, thighs and shoulders. Calves are often enlarged. Inheritance is X-linked recessive. DMD primarily affects boys, who inherit the disease through their mothers. Women can be carriers of DMD but usually exhibit no symptoms. The progression is that DMD eventually affects all voluntary muscles, and the heart and breathing muscles. Survival is rare beyond the early 30s.
When Christian was 3 we had him tested for muscular dystrophy. The test result came in negative. We were thrilled! As Christian got older we notice more and more the same symptoms that Raylee had. We had him tested again when he was 7 and the dna test came back in as positive for duchenne muscular dystrophy.
No one can explain it, no one has to, we just have to have faith that the big guy upstairs knows what he is doing.
Because we understand the hardships that families go through, our family started The Rileigh and Raylee Angel Ride Foundation for children with life threatening medical needs. ANGELRIDE It is a foundation started by the inspiration of two children - Rileigh and Raylee. Rileigh was born with Down syndrome, she is a friend of ours, and Raylee with Muscular Dystrophy. Their genetic conditions brought to light the hardships a family is challenged with when caring for children with special medical needs. A small group of family and friends took this awareness and turned it into the determination to establish a funding program that could help families faced with similar circumstances.
The mission of the foundation is to assist families of children, ages 18 and under, who have special medical needs. Qualifying families may receive financial assistance to help pay for the costs associated with the medical needs of these children. A family is eligible for benefits once per calendar year. Since its inception in 2001, the foundation has helped over 700 applicants and that number continues to grow each year.
A network of over 400 volunteers gathers each November to bring to life the foundation’s main fundraising event - The Angel Ride. The inaugural Angel Ride in 2002 was a leap of faith attempt to raise seed money for the foundation. It began as an afternoon motorcycle ride and picnic and has now grown into a two day event with headcounts exceeding 10,000. The motorcycle rider participation has continued to reach new levels each year with the 2008 rider attendance topping out at over 4000 strong. The motorcycle ride is followed up with concerts by major entertainment artists. To see, first hand, the community and corporate support for this event is a heartfelt experience when considering its objective – to help a child.
We will be celebrating our 10th year in November.
Now, Christian is 8 years old and full of life! He is funny, witty and sweet as can be. He loves school and makes great grades. His favorite thing to do is to play on his xbox and ds. He makes friends everywhere he goes. He loves his brother and all his animals. (more on them later!!)
When Raylee was 5, he got his MAKE A WISH. It was to go to DisneyWorld. Christian was 1 when we went so he doesn't remember much. Since then we have gone back to Disney but we haven't had as much time to spend and Disney can get expensive!
Christian has decided that he would like for his wish to be flying to DisneyWorld and swimming with the dolphins at Discovery Cove!!! He would like to stay at Animal Kingdom Lodge!!! Christian just loves Disney and animals so we think it's just right!!!
We had his meeting with the MAKE A WISH rep's last Thursday night! They were wonderful and brought him a GAMESTOP gift certificate so that he could pick out the perfect game!
He answered all of their questions. They asked him his favorite color, his favorite toy, his favorite Disney character-Finneas and Ferb!!
Christian is very excited and we can't wait to hear if his wish is granted!
Thanks for following along and we will keep you posted on all things to come!!!!!!
CHRISTIAN'S MAKE A WISH COMING TRUE!!!!!
Wanted to say hi and see when your wish is? Hope you hear soon.
