MPS means MANY things, but this page helps paint a small picture of how MPS prevents children from “Just Being Little”!
This is not the life we dreamed of for our little boys!
Once a week, like clockwork, Jason and Justin pack up their favorite toys, snacks, and a few special blankets to visit Joseph M. Sanzari Children’s Hospital at Hackensack University Medical Center to receive their Enzyme Replacement Therapy (ERT) Infusion “MUSCLE JUICE” (as we call it). 4 year old Jason and 2 year old Justin must spend 4 hours every week for the rest of their precious lives receiving Intravenous Treatments, to help some of their organs from failing too soon. The treatments are not considered a cure for their genetic disorder, by any means, but thankfully it prolongs life for MPS 2 patients.
In addition to a Weekly 4 Hour Intravenous Therapy
Jason and Justin do not go more than a few weeks without a visit to a doctor or specialist.
Their list includes:
- MPS Genetic Specialist (every six months in North Carolina)
- Primary Pediatrician
- ENT Ear, Nose, and Throat
- Physical Therapist
- The boys also receive the following therapies 2 times a week:
- Speech Therapy
- Physical Therapy
- Occupational Therapy
- Developmental Instruction
And they do it all with COURAGE and SMILES! They give us the strength to go on.
The only thing we can do at this time is pray for a miracle, or that someone, somewhere finds a medication that can cross the Blood Brain Barrier, or better yet, a cure for this unexplained, complex genetic disorder
Before it is too late!