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Support gentle Damaris as She battles a RARE SMA
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-19837 Days Left

Support gentle Damaris as She battles a RARE SMA

Raised: $10,580.00 / Goal: $25,000.00

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Hello all!
We, Johnny and Laura, are fundraising for Johnny's brother, Alex and his wife Miriam as they watch their daughter, Damaris (who is our niece) battle a very rare type of Spinal Muscle Atrophy (SMA). "She is 1 of less than 25 cases in the world and possibly the only known case in the U.S."
They have been in and out of the hospital with their daughter's condition all the while holding a full time job and parenting their older daughter, Keilah who is 3 years old. This year that Damaris has been with us has been unbelievably challenging for both her mom and dad. Currently, Damaris has been in the hospital for over a month battling a virus that collapsed parts of both of her lungs which was caused by her underlying condition of a rare type of SMA. The doctors are preparing the family for the loss of their daughter and hospice has been assigned.
Alex and Miriam have tried to sign up Damaris for life insurance with over 100 different carriers, but all carriers have declined coverage because of her diagnosis and short life expectancy. This go-fund-me account will support parents with setting plans for Damaris. As they receive medical bills in the near future (as Damaris health coverage recently ended with her first birthday) I will update this account with a new amount needed.
Below I have included more information from Damaris' Dad, Alex:
"Hello Family and Friends.
These have been the toughest, most difficult past few weeks of our lives. Let me start from the beginning. Ever since our beautiful daughter was born last year, we noticed she was not physically developing normally as weeks and months followed. After a few months of constant appointments with her pediatrician, we were referred to medical genetics to find out if there was an underlying issue causing the low muscle tone(hypotonia). Around late July this year the genetics team at Valley Childrens Hospital (VCH) finally let us know they would start on the first portion of genetic testing, but results would take about 2 months to come back. The drawback was that they were only going to test for ‘prader willi’ which our pediatrician did not suspect and was more concerned of Spinal Muscular Atrophy (SMA). We get to early September and our daughter gets sick and admitted to VCH for a few nights due to respiratory issues. A week and a half after being discharged we end up coming back to VCH only to be admitted again for the same concern of respiratory issues. Even though she is 11 months old, she does not have the necessary strength for her age to cough out the gunk in her lungs, therefore causing respiratory issues. She gets admitted to VCH on 9/20 and a few days later, ends up having to get intubated since her body was working way too hard and still not getting enough oxygen. The day after she was admitted I called the genetics dept to push them to perform ALL the genetic screenings they can do and rush the results if possible.
The following Monday, they took blood samples from our daughter, my wife and I to get started on a very detailed genetic screening. Results came back a week later and although we wanted an answer, the one we got was not what we expected. She came back positive for a VERY rare form of Spinal Muscular Atrophy. What makes it super rare is that her SMA is caused by the TRIP4 gene. There are many common forms of SMA that are treatable with medicine and/or clinical trials, BUT our daughter’s form is so rare that there are no medicines nor clinical trials that have been developed. From what we’ve been told and researched, she is 1 of less than 25 cases in the world and possibly the only known case in the U.S.
What makes this even more difficult is that no doctor here can give us specific information on her form of SMA (this is no fault of theirs since her diagnosis is super rare). Unfortunately, the one thing that both the neurologist and genetics doctor agree on is that SMA is a neurodegenerative disease. In other words, her body will deteriorate at some point, but since her condition is rare, they are unable to say when her body will start deteriorating. According to other cases, our daughter has outlived what she was supposed to and in other reports she only has months left. To say this news was heartbreaking would be an understatement.
Our daughter is still at VCH taking it day by day. Her lungs have improved, but there is an area in her left lung that remains collapsed. We now have a palliative care team, similar to hospice, talking to us due to the circumstances. Just yesterday we were asked about what our decision would be if she were to stop breathing and that question took us by surprise. We were not expecting that question so soon and did not imagine we would have to consider this so soon. We have tough decisions to make that I would not wish on anyone to have to think about. Through all of this, we continue praying to God. We know He has the power to heal her. Science has already said there is nothing that can be done, and it is only a matter of time until she’s gone.
Only God has the power to fully heal her. We believe God has the power, but we also know that our plans are not His plans. God knows our desire, yet we understand that He has a reason for everything. We ask that you keep our daughter, Damaris, in your prayers through this tough time." -ALEX
Damaris remains in the hospital as I write this with only a 1/2 working lung and according to doctors not much time. Any funds raised will help the parents be able to plan for the end of their daughter's life as well as potentially help them pay off future medical bills.
All of you who are taking time to read this entire message are so kind and appreciated. Prayers and support will not go unnoticed.