My best friend has a daughter who is 15 months old and has just been diagnosed with MPS 1, also known as Hurlers disease. Here is a website with more info: http://tinyurl.com/5btesnThis disease is progressive, devastating and deadly. Children who have it rarely live 10 years, and are faced with many of the following symptoms:
Stiffened joints
Skeletal malformations
Heart disease
Recurrent upper airway infections
Lung disease
Corneal clouding, eventually leading to blindness
Frequent ear infections and hearing loss
Delayed mental development and progressively worsening mental retardation
Hydrocephalus (fluid on the brain)
and many more…..
Currently the only treatment for the disease that shows any promise is either a cord blood transplant or a bone marrow transplant. My friend is now in the process of having her daughter evaluated for a possible transplant candidate.
In honor of sweet Bella, I am asking anyone who reads this to go to this website: http://marrow.org/ , and register to be a marrow donor. If you cannot donate or do not wish to donate marrow, please consider a monetary donation to help offset the costs of tissue typing for others who donate. There is also information on this site about donating umbilical cord blood when your baby is born. These can be lifesaving gifts!
Heather.... I love you so very much and Bella, Charles and I thank you..
ReplyDeleteI know I haven't answered your calls... I've been pretty depressed but am trying to be prayerful and get out of this slump I am in. I will try to post info on my blog about the appointment and our trip down to Miami... Right now we're getting bella registered on COTA.org and hopefully get the ball rolling on everything we need to get done before her Transplant takes place... Doctor said it would be in two months... I"m hoping and praying it will be sooner.
Love you my dear friend!!!
EC