Benji is a 21 month year old little boy who was diagnosed at 16 months old with a rare genetic disease. He has MPS 1 (Mucopolysaccharidosis I) which is caused by a mutation in a gene that causes his body not to produce a necessary enzyme. The lack of this enzyme effects his organs, his vision, his body system, his skeletal system and his cognition. There are only about 2,000 people in the world diagnosed with this disease. Immediately after diagnosis, Benji started going to the hospital once a week to receive a 4 hour enzyme infusion. In addition to this treatment, Benji received a bone marrow transplant at the Children’s Hospital of Philadelphia (CHOP) in August. This required him to have a central line put in and to receive 7 days of chemotherapy drugs in order suppress his immune system so that his body would not reject the bone marrow transplant.
After 55 days, Benji was able to leave the hospital for an apartment near Philadelphia. He initially was going to the hospital 4 days a week after being discharged to get medication and to undergo a process to help his Graft vs Host Disease (GVHD). Unfortunately, that process did not work, and he is now undergoing a different treatment for his GVHD. This medical journey has required that Benji live in Philadelphia near CHOP for 4 months and for his parents to take unpaid leave from work to care for him. He has to live away from one parent and his younger brother. He has had to stay isolated from non-relatives and groups of people since his immune system is so suppressed. His GVHD has been uncomfortable and itchy and not easy to manage. He is on a large amount of medication including steroids as he tries to recover from his transplant. The bone marrow transplant is not a cure for his disease, but it was and is the best chance Benji has of having his organs and systems be only moderately or mildly affected. He will have to deal with this disease for the rest of his (hopefully long) life. All money raised is going to the daily living expenses of Benji down in Philadelphia, as well as his medical bills. When he is finally allowed to move back home, the money will also be used to help cover the transportation costs of bringing Benji back and forth to his numerous doctor appointments in Philadelphia.
The Peace Within Spa & Wellness Center is offering Swedish or Deep Tissue Massage (Regularly $90.00) at a discounted price of $65.00. For each massage purchased with this special, The Peace Within Spa & Wellness Center will donate $20.00 to Benji’s family in order help on his journey. What a great way to finish or start your holiday shopping. Giving the gift that keeps on giving. Make sure you look on the specials page and click under his name.