Help Tracy raise money

This year we have decided to run the falmouth road race  for The Genesis Foundation for children at MGH. 

This organization is dedicated to providing care for children with rare diseases and genetic disorders .

Our team is called Ro Runners named after my son, Ronan.

Ronan turned 13 this winter and was your average teenage boy . He was playing hockey , loved skiing and riding his bike . Ronan is not a complainer, so when he was complaining of leg pain and not being able to walk without pain I knew he had to be seen . 

He started to develop fevers  and sleeping a lot . I called children’s and they were able to get him in the next day . He had an x-ray and they told us he had Rickets. We couldn’t even believe what we were hearing . He has such a good diet . That’s when we knew it was something else that caused it. 

We had multiple appointments and they all said the same thing . They couldnt help us and we needed a specialist - endocrinologist . The soonest appointment we could get him in was in September. I could not fathom how this was the only option . 

Unfortunately this is a realitity with Rare Disease.

Thankfully Ronan was able to get in to a specialist sooner and was diagnosed with a rare metabolic bone disorder .

HHRH, it’s so rare that he is the only known pediatric patient at MGH and there are less than a 1000 people in the US that have it .

This means that there is limited research and limited treatment options and no known cure . The only treatment is medication daily . 

With all of this being said I am very aware this could be worse and Ronan has a good attitude about it. 

Please consider donating to our cause. 

Thank you in advance