Brey & Bryn's Atlanta Mito Trip
Help us get Brey & Bryn the help they need by helping us get them both to Atlanta to see Dr. Kendall, a leading expert!
For those who are not familiar with our family, my husband Gavin & I have 3 children (Lauren 5, Breylon 4, and Brynlee 5 months). Our son Breylon has a neuro-degenerative, fatal form of mitochondrial disease (If your unsure of what mitochondrial disease is, you can visit www.umdf.org for more information). He has been fighting this disease since he was 6 mths old. At 2 yrs old he was placed on pediatric early care hospice. He depends on a central venous line in his chest to deliver his only source of nutrition which is TPN because he is unable to use his stomach or his feeding tubes due to intestinal failure. He is cognitively impaired, requires oxygen for central apnea, struggles with bronchopulmonary dysplasia, low muscle tone, chronic pain, hearing and vision loss, seizures, and many other life threatening issues. He has had over 20+ surgeries and has spent nearly a quarter of his life hospitalized.
In January, we welcomed Brynlee. We knew during the pregnancy that their were some abnormalities with her growth and development. At 2 weeks she was diagnosed with swallowing difficulties and aspiration, at 1 mth she began having seizures, and now at 5 mths she is struggling with failure to thrive, growth restriction, as well as liver issues. She is highly suspected to has the same awful disease as her brother.
The reason this appointment is so very important is that their are very few mitochondrial specialists in the world. Most of those specialists have a significant waiting list. Breylon and Brynlee need help now! Dr. Kendall is that help!
Breylon & Brynlee have an appointment in Atlanta, GA on Aug. 28th to see one of the leading expert specialists in mitochondrial medicine. Unfortunately, due to the unique sub-specialty of this mitochondrial specialist (Dr. Kendall), we must pay out of pocket.
It is $450 per child=$900, as well as traveling expenses including lodging. We are desperately in need of assistance with funding this trip.
As you can imagine, having a medically fragile, chronically ill child is devastating; now imagine having two. Up until now, we have never had to reach out and ask for financial help. We have always found a way to make ends meet. But this is just not feasible for our family, on top of the other regular medical costs. So for those who are able and willing to help our family, we greatly appreciate your support in helping us get our children the help they so desperately need!
If you would like to know more about our families 'mito journey' you can read our sons carepages site (http://www.carepages.com/carepages/Breyman).