Little Kids, Big Dreams

Mason Thomas Clemence was born on November 3, 2010, weighing only 3 lbs 13 oz. His older sister was diagnosed with a rare genetic condition right around that time, so Mason’s family and the medical team knew that Mason had the same condition. He was diagnosed with DNA Ligase IV Deficiency right away, which is a rare and serious immunodeficiency. Currently, there are only 30 documented cases of Ligase IV deficiency in the world, and Mason and Lizzy are two of them right here in our community. The only known treatment is a bone marrow transplant. Lizzy’s transplant was successful. She is 13 now and she celebrates her cell day on June 9th every year.

Mason is 11 now and has had complications since his Bone Marrow Transplant 10 years ago. He has developed Graft versus Host Disease of the skin, gut, and eyes. This means that some of the donor cells from the bone marrow transplant attack and damage Mason’s healthy cells. This has affected Mason’s skin, scalp, eyes, GI tract, lungs, liver, muscles, and joints. He has a feeding tube so he can get enough nutrition to stay healthy, oxygen to help with breathing, a wheelchair for back and bone pain, glasses for his eye damage, and lots of medication, monitoring, and trips out of state to his Bone Marrow Team for treatment.

It also means that Mason is very susceptible to viruses and illnesses. Mason is a Glenwood Titan, but he hasn’t been able to go to school for the past two years due to his compromised health and has continued to learn virtually. Mason needs a private duty nurse (RN or LPN) to help at home and attend school with him, but his family hasn’t been able to find anyone to fill this role. Mason should be joining the friends he made in elementary school as they transition to Glenwood Intermediate School in August, but he continues to face health challenges. Mason just wants to be healthy enough to go to school in person and interact with his friends again.
 
Mason’s condition is so rare that the closest team to treat his condition is at Cincinnati Children’s Hospital, which means a lot of travel for him and his family.

Mason is in the hospital right now with a collapsed trachea and bronchi, and blockages in 2 lobes of his lungs. He is having headaches from CO2 retention. He also has an enlarged liver and his liver lesions are larger, which may explain his abdominal pain.

 Mason usually stays at the Ronald McDonald house for his specialist appointments (they usually span 2 days) where there is a game room and snacks. Now, he’s admitted and trying to get better from a hospital bed.

 Mason's mom and sister are with him. His dad is at home in Springfield and visits on the weekends. Mason’s parents are trying to maintain work schedules, school schedules, and all the planned and unplanned challenges that come with this disease. Mason’s family has to commute to Ohio, and the impact of these high gas prices is becoming unmanageable.

His family needs help with gas expenses and help with covering any expenses not paid by insurance.

Please help Mason and his family!




Fundraising team (3)

Laura Gregory 
Organizer
Raised $3,110 from 83 donations
Woodside, IL
Kelly Clemence 
Beneficiary
Melissa Davis 
Team member
Raised $885 from 24 donations