My good friend found out she and her husband were expecting, starling because they were young newlyweds. After the initial shock wore off they became excited (and terrified). to meet their baby. This boy was to be the first grandchild on both sides, a very exciting time for everyone. Then he was born; huge, gorgeous eyes that stole your heart, everything s tiny, so fragile. After a few months he had a seizure that eventually turned into daily seizures that often occurred multiple times a day. He went from an interactive, happy baby making daily strides to a somber baby. He spent so much of his short life in the hospital, but answers were varied and never stuck to this situation .
That is until they discovered their sweet baby boy was suffering from a disease call infantile spams disorder. This caused him to experience multiple seizures (up to 10) per day, this left him a sad boy whose engaging personality was being suppressed by the medications to prevent the seizures. This was not cured quickly at Primary Children's Hospital because it is rare and there is little research that has been done.
This new family was devastated, and Cretia (the mama) is not into sharing her personal experiences. However, she created a blog (http://spazfamily.blogspot.com/2013/11/infantile-spasms-awareness-fundraiser.html?spref=fb) to cope and spread awareness for this disorder. Most new parents would have become depressed over their long journey with this disease, but Cretia and Jake (the papa) have been advocate for the cause ever since. Baby Bridger is doing so well, but will be on medications for a long time. Due to their experience in dealing with the unknown and coping with a baby they could not "fix" they have been raising money to donate to the research of this disease and spread awareness.
On December 7th from 3pm to 9pm at the Deseret Peak Indoor Arena located at 2930 West Highway 112 Toole, UT there will be a super fun luau with several vendor booth, a bounce house, dunk tank, raffle, silent auction, authentic singing/dancing/fire and knife show, authentic food, and much more!! $5 entry gets dinner and all the fun you can take. If there is any way you can mention this on your show or let Cretia or I come and take 30 seconds of your time we will be eternally grateful. I love you guys and your show, keep up the great work!!