Liam's Bumpy Bone Request

Liam’s first surgery has been scheduled for March 18th, which is perfect timing for what we are about to ask you for…
Liam was diagnosed with Multiple Hereditary Exostosis (MHE) when he was 2.5 years old. Less than 200,000 people have MHE. For 90% (or so) of people diagnosed with MHE it is genetic, for the other 10% of the population it is a genetic mutation. In Liam’s case he is in that 10% where it was a random mutation of his genes.

People with MHE have “bumpy bones” throughout their bodies, different shapes and sizes in all different locations. A lot of people with MHE have chronic pain. There are surgeries to help remove some of these bumps, but they usually grow back. While surgery is beneficial to relieve some pain, it is usually a last resort.

There is an amazing organization called the MHE Coalition. They provide literature about MHE and support for all affected by MHE. The Coalition sends support through their We Care Program sending packages for emotional support surrounding surgeries. This is where we need your help.

For anyone able, please consider making a donation to Liam’s GoFundMe page to support the MHE Coalition and to help continued their support for all people affected by MHE.

MHE is considered a rare genetic disorder, World Rare Gene Day is a day to bring awareness to rare genetic disorders. This year it is celebrated on February 29th 2016. From now until February 28th, Liam is asking for donations to help his Bumpy Bone Club. For every $100.00 raised someone in our family will dye all (or part) of their hair blue to bring awareness to Rare Genetic Disorders. As a Thank You (if you make sure we have your address) you will be mailed a Rare Gene Awareness ribbon.

For the first $100 Liam will dye his hair blue, $200 Danny (dad), $300 Hillary (mom) and Leilah (sister), $400 Abby (aunt), $500 Sally (great aunt), $600 Amy (great aunt), $700 Robin (grandma), $800 Sherry (granny), $900 Jim (grandpa), and $1000 Becky (aunt) and Diane (Liam's great grandma), $1100 Jaime (babysitter), $1200 Kyle (cousin and his roommates!), $1300 Juliet (cousin), $1400 Carley (one of Liam's 5 yr old BFFs), $1500 Natalie (family friend) and Linda (great aunt), Jordan(cousin) at $1600, Camryn (family friend) at $1700, at $1800 Mikey (one of Liam's 5yr old BFFs) and at $1900 Maggie (amazing friend and Mikey's mom).