One of Emily's biggest battles since this recent hospitalization is within herself and the stress she carries within her heart of what might happen next.
Emily has always been acutely aware and so wise beyond her years throughout this disease. This has served her in so many ways, yet now it is causing her to be fearful of what lies ahead. She knows that she has battled so many times and won, yet she also knows how hard the battles are to recover from.
It is always difficult for us as parents to see our children suffer for any reason and it is extremely difficult to watch over and over and over again. I am one of the more positive people that I know and I also have a lot of strategies and disciplines in place that I come to daily to rise above each day. And with the help of family we are working to help Emily with coping strategies to feel less fearful and safe for whatever happens next, whenever it may or may not happen.
Here is some more good from our partnership with Stanford:
“In addition to determining the length of telomeres in the blood cells of SIOD patients, the Lewis lab is determining if two important factors in maintaining telomere length – the enzyme telomerase and hexanucleotide telomere RNA - are reduced in SIOD patients.” – Dr. David Lewis
We are thankful to all of our donors and supporters on behalf of our Emily and #SIOD research.
We are blessed!
