Fundraising Events:
Robbie's Rainbow provides funding to families of children that require financial assistance to access treatment
for Crohn's and Colitis disease, where biologic treatments are crucial, and all financial resources have been exhausted, and
no insurance or government aid is available.
The mission
of Robbie's Rainbow is that no child will be turned away from the treatment they depend upon for an optimal quality of life
due to lack of necessary funding.
The Robbie's Rainbow fund begun after spending considerable amounts
of time at Sick Kids Hospital with her son Robbie, while he was going through the diagnosis process and several treatment
options/regimes for severe Crohn's disease. Robbie is 7 years old. Most often we see adults diagnosed with Crohn's and Colitis
but sadly this is changing and more and more children are now being diagnosed.
Some kids with Crohn's and Colitis are able to be treated with some standard and accessible drugs (steroids
and immunosuppressants) and those cover the kids while they endure flare ups of the disease and hold them off until remission
sets in.
Some kids however, do not respond to the standard
treatments, and they require a treatment (a drug that is termed a biologic drug) that is incredibly expensive (typically $3,000
- $5,500 per treatment) and typically they need to receive the treatments every 6 - 8 weeks, and will need to for the remainder
of their lives. This drug, called Remicade, is not covered by the government, and often times in part, or not at all, by most
drug plans. There are many families who cannot afford the treatment their children need to lead an optimal life. Please note
that my description of an optimal life in this case is one without crippling pain, one where the child's body is not cannibalizing
itself, and when the child does not suffer from malnutrition, undue arthritis, and can lead a normal active life.
The great news is that if a child responds to Remicade, the treatment can
put the child into a 'cured' state. The disease will be confined (Crohn's will continue grow throughout the intestines if
not contained), there will be little to no inflammation, nutrients can be absorbed, and the symptoms will be minimized, allowing
the child to lead an otherwise typical/normal life.
The
goal of Robbie's Rainbow Fund is to provide funding to families to help make the treatments accessible to those who are in
the most dire financial need.
