FRAMINGHAM – Today is National DIPG Awareness Day.
Devin Suau, 6, who was diagnosed with the disease after a snowboarding fall in January 2017, died the same year he was diagnosed.
Diffuse Intrinsic Pontine Glioma (DIPG), is a very rare and aggressive form of cancer typically found in children under the age of 10. There is no cure and no one has survived the diagnosis.
The family had hoped Devin would be the first to defeat the disease and launched a #WhyNotDevin campaign.
Sadly, Devin died on October 20, 2017, just days shy of his 7th birthday.
His mom Christine Suau is still fighting for a cure. The family created the #WhyNotDevin Foundation.
“We need to spread awareness, fundraise, and continue spreading kindness. Hopefully, together we can help find a cure and make the world a better place while doing so,” wrote Christine this morning on social media. “Thank you for your continued support and love. Devin’s Army is amazing and we couldn’t do this without you.”
Massachusetts Governor Charlie Baker has declared today, May 17, DIPG Awareness day in Massachusetts.
“Take time today to remember our “Little Chief,” that made us all more aware of DIPG, and the loss so many families suffer,” Tweeted the Governor.
“Last year, on May 17, we flew to London for Devin’s surgery and for treatment for a trial that we thought would lead to our miracle. We talked to Governor Charlie Baker about how there was nothing offered in the United States to try to cure our son. No funding and no treatment for Devin’s tumor mutation in our country. How could that be in 2017?!,” wrote Suau on social media. “In the 1960’s Neil Armstrong walked on the moon but couldn’t save his child from DIPG. Almost 60 years later, the end result is still the same. This has to change!! Because of organizations like The ChadTough Foundation National Brain Tumor Society and Michael Mosier Defeat DIPG Foundation who are helping to fund research and #whynotdevin who will soon help families during their fight and to get to these trials we will start to make a difference. But we need your help more than ever. ”
Christine is asking families to continue to fight for a cure for DIPG by donating to the Foundation or by using one of the links below:
- Venmo — https://venmo.com/WhyNotDevinFoundation
- PayPal — https://www.paypal.me./WNDFoundation
- Checks to #whynotdevin @ PO Box 755, Framingham, MA 01701
- To shop for #whynotdevin merchandise — https://whynotdevin.myshopify.com/
- To order #whynotdevin kindness cards to help with random acts of kindness and paying it forward in Devin’s honor — https://devinsarmy.go.customprintcenter.com/register