Michael Perrino

Some of you know that our son, Michael was born with TAR Syndrome (Thrombocytopenia absent radius). TAR Syndrome is characterized by a platelet disorder and an absence of the radius (arm bone). Michael has no upper extremity bones and has hands in the shoulder areas. For Michael this means that both hands are short extensions near his shoulder joints. His legs are affected as well. He has no knees/patella.

Michael is a caring, loving, funny, charming, and a social 12 year old. He loves playing on the Xbox, and playing soccer and football on the floor with his younger brother. He loves the Bruins, Patriots, and the New England Revolution soccer team. He enjoys hanging out with his friends and collecting football cards.

For the past eight years, Michael has been undergoing numerous surgical procedures by the world renowned Dr. Dror Paley who specializes in limb lengthening and deformities to help to straighten his legs so that he can walk. However he will still need to use a wheelchair for mobility throughout his life. He gets physical therapy twice a week to help him stand and walk on his own. He still prefers to roll on the floor to get around faster. He has a power wheelchair that he uses for school.

As you can imagine, there are many expenses related to Michael’s condition that are not covered by insurance and must be paid out of pocket. So of these are co-pays, deductibles, our numerous ongoing trips back and forth to The Paley Institute in Florida and our relocation expenses while we are there. This is putting our family up against a challenge we no longer can meet alone and need your help.

To help with the financial burden of Michael’s uninsured expenses, a fundraising campaign in his honor has been established with HelpHOPELive, a trusted nonprofit organization that has been providing community-based fundraising guidance to patients and their families for more than 30 years. All donations are tax deductible, are held by HelpHOPELive in the Northeast Catastrophic Illness Fund, and are administered by HelpHOPELive for illness-related expenses only. To make a tax-deductible donation to this fundraising campaign, click on the Donate Now button.

Michael has always wanted to be treated just like everybody else, and never feel different. He will always have some struggles and challenges, but he always gets through them. We are so very proud of the young man that he has turned out to be.

On behalf of Michael and our family, thank you in advance for your kindness, generosity, support and prayers.

Misty and John Perrino
774-301-1856
[email protected]