Rothmund Thomson Syndrome Foundation 5k, 10k or Half Marathon

My personal goal will be to collect $500 (one for each person world wide living with RTS) per mile for 13.1 miles for a total of $6,550. With 98 days to go we have have hit the first goal, so I have raised it to $10,000!!  This is a huge goal for us to hit, but we are looking forward to trying our best!

My name for those of you wo do not know I am, Staci Hanson.  My daughter Lucy was born with a very rare genetic condition called Rothmund Thomson Syndrome.  I, like most people, had never heard of RTS until November 2019.  We had certain signs when I was pregnant with Lucy that she was going to be born small, she had IUGR (intergrowth uterine restriction) and was born via c-section at 34 weeks weight 2lbs 4oz.  While she was very small, she was very healthy.  It didn't take long for everyone to fall in love with her and deem her,  "perfect Lucy".  We spent 35 days in the NICU basically waiting for her to grow.

Upon our arrival home she was small but developing like a normal baby would- eating, sleeping, learning and growing.  It was around her third month of life when she began to develop a rash on her cheeks.  At first we thought it was just eczema and we saw a dermatologist who told us how to treat it and we went on with our lives.  Then in the summer, we began to notice it had spread to her hands and backs of her arms a littlebit, so we called the dermatologist again who insisted it was just eczema and to continue to treat it as such.  She was also gaining weight very slowly so we had begun to see a GI doctor who was following her pretty closely.  Around Halloween the rash was persistent and spreading to her legs and I knew something was not right, it did not look like eczema to me any longer and was not going away.  We were referred to another dermatologist who then told us that what Lucy had was "poikiloderma", which is basically when blood vessels have formed close to the surface of the skin, and while she could tell me what it was she didn't know why she had it and recommended I see a new doctor in the practice who was younger and just out of school, so that is what we did.  

That is when I first heard the words Rothmund Thomson Syndrome.  In that initial appointment with the dermatologist, I tried hard to hold myself together like I had for many weeks throughout my pregnancy, as well as thoughout those long days in the NICU.   He informed me that he couldn't be certain and recommended we have genetic testing done and be seen by a pediatric dermatologist. We also took a trip to Boston's Children's Hospital to meet with Dr. Steven Gellis, he took one look at Lucy and confirmed that she had RTS.  Shortly after that it was confirmed by genetic test so we had our official diagnosis RTS type 2.  If you are interested in learning more about RTS please visit RTSplace.org

Lucy's everyday is that of any typical kid- she is busy, learning, funny, strong willed and sweet.  We do have to take some extra precautions in the sun, have a few more doctor visits then most kids and pray that she always stays has healthy as she is today.  Since RTS affects less than 500 people world wide funding for the research is very difficult to obtain.  The Foundation tries to raise enough money each to keep the patient registry active, provide at least $50,000 towards research, obtain enough money for the caring and sharing conference and to spread awareness about RTS.  Covid has made this more difficult than ever before so we are getting creative.  

Please consider donating today, participating and/or order a t-shirt from our ongoing t-shirt campaign https://www.bonfire.com/rts-foundation-fundraiser/  

THANK YOU TO EVERYONE IN ADVANCE!!!