Aiden G. - Quilt Finished in 2009

Born: March 12, 1997

Illness: Generalized Dystonia, Cerebral Palsy, Seizures

A Thank You From Aiden's Family!

3/11/09

Thank you so much - all of you - for Aidan's quilt. It is gorgeous. Thank you all for giving so much of your time and creativity for our children.

Please know that everytime we look at Aidan's quilt, we are filled with awe that so many from around the world gave so much love to children they have never met, but care for all the same. Feeling this much love from the world around him helps give Aidan the strength and joy he needs to overcome the challenges.

Sharry, Aidan's mom in Alaska

Aiden G.'s Story

Written by Aiden's mom Sharry in May 2008

Aidan is our wonderboy.   He has a truly amazing spirit that inspires everyone around him.  He was born very premature (12 weeks), and got sick about a week after he was born.  Before leaving the hospital, he was diagnosed with cerebral palsy (an early brain injury).  

Unfortunately for Aidan, his early diagnosis was only the beginning of the journey, and not the part that would present the most challenges over time.  When Aidan was three, he was diagnosed with a progressive movement disorder, dystonia, that causes all the muscles in his body to spasm and twist painfully.   Gradually dystonia has caused him to lose many of the skills he had gained in spite of his cerebral palsy.

At one time Aidan was able to use a walker, a spoon, and hold books for hours, turning their pages one by one.  (he loves to read!)   Now Aidan can barely stand at all, his jaw spasms are hurting his mouth, and his knees pop when his legs spasm.  His neck and abdomen hurt a lot, and the spasms can affect his breathing, digestion, etc.  But his hips and legs are really the greatest danger and source of pain.  It's frustrating because the surgeons, like hip surgeons, can't do anything directly to his legs that will help - the spasms come from inside his brain.

The cold in Alaska makes Aidan's dystonia worse, but it is Aidan's home.  He has gained so much here from the experiences and opportunities in the wild that few other children, who use wheelchairs are fortunate to enjoy.  His spirit soars with the eagles, and runs with the bears, and he we do all we can to help him experience the wild as much as his health allows.

Aidan's treatment through his life has led him through many challenges, and there are more to come.   He has had really serious problems with many of the treatments we have tried to slow down the spasming of his muscles, including seizures, breathing problems, and dangerous rashes.   One of the hardest things he faces is that he just can't tolerate the treatments he needs.  In an effort to get past oral medications, for the past year Aidan has had a pump in his stomach that delivers medication to the top of his spine near his brain, but he has had lots and lots of problems with it.  We've slowly been turning it off for several months, and are getting ready to hopefully move on to "the next step" for Aidan.

A neurosurgery team is going to attempt to provide Aidan with another system to control his dystonia as soon as possible - a Deep Brain Stimulation system.   This system works on electricity, like a pacemaker for the brain, and will hopefully finally help Aidan feel better, without all the challenges he has faced from his medications. It involves drilling holes deep into his brain to place the electrodes, then putting battery packs in his chest.

We are so excited and hopeful for Aidan, even though this surgery means he will be traveling far far away from home, yet again.   And surgery is....full of challenges to be sure.   But dystonia does not allow us the choice to do nothing, and Aidan has taught us the courage and strength to hope and pray for our dreams to come true.   Our basic hopes for Aidan are:  pain relief, no more dystonia progression, and that his legs/hips are safe.  (And less meds!)    And we have our "pie in the sky" dreams too....