Richie's Journey

I am hosting a fundraiser, because I want to help Boston Children’s continue its amazing work and research for kids. It's dontations are 100% giving to his genetic metabolic disease. Richie was diagonsis because Ma passed it to be part of the new born screening, PKU new born screen. His came back positive! This genetic metabolic disorder, Cobalamine C Deficency also known as MMA CBlc. 1 out 50,000 kids have this and Our Richieis the 1 and the rare form of it. We want to help improve and support the research of this disease to understand why and how to treat or prevent! Pushing for more Genetic Testing! Empower families that are all affected by this, it's a life long battle we witness daily! Equality of the support and screenings of this need to be equal from ocean to ocean and connecting us together to be each others support is crucial! I spent half my own time researching and reaching out to other families and realizing the diversity in how this is treated and screened. The lack of research and funding! Together we can change that and hopefully turn it into a gentic disease we empower to not be rare or orphaned! Please help our cause in honor of the little man who inspires us daily, to appreciate the small things!
Cobalamin C disease (cblC), also known as methylmalonic aciduria with homocystinuria, is an inherited disease. Most times known as orphan disorders and rare disease. Let's change this together and show support, because Richie has shown us the meaning of a daily battle and yet with all his physical limitations and set backs he always has a contagious smile and happiness in everything he does! Even things we forget to see he good in Richie will find! He has shown us the importance of family and unity, let's be that bridge together, and together we can make a difference!
http://newenglandconsortium.org/for-professionals/acute-illness-protocols/organic-acid-disorders/methylmalonic-acidemia/
Above link is website for families dealing with this battle!
The hospital's patient care programs are remarkably sensitive to what sick and injured children and their families really need.
- Researchers regularly make amazing discoveries that change children's lives.
- Boston Children's welcomes kids whose families can't afford health care—more than any other hospital in Massachusetts.
- Community programs make a point of reaching out to help low-income and at-risk kids.
And the hospital doesn't just stop there. Boston Children's truly understands the importance of training the next generation of top pediatricians and nurses, so they can continue to provide the best, most innovative care possible to kids.
Please support my fundraiser—and Boston Children’s Hospital.
If you think this page contains objectionable content, please inform the system administrator.