Todd and Katie Musser

In the fall of 2021, my entire family endured a week of illness. Three of us recovered. One did not. I asked my eleven-year-old son to rest and get better, but his condition only worsened. Although his fever subsided, his stomach pain persisted. We sought help from our local pediatrician and Children’s Hospital, and even considered counseling, suspecting a psychosomatic issue. Nothing worked.

We traveled extensively and consulted with a team of pediatric neurologists and gastroenterologists who were confident their treatments would be effective.  No treatment or medication could touch or alleviate his pain.  My son’s pain only intensified.  The pain landed him in the hospital for days, bent over in agony. I never imagined a child could endure such pain and survive.  Sometimes I did not know if he would survive.  Despite running numerous tests, we found no answers.  We had no idea what we were dealing with.

We visited the UCLA pain clinic, but no one could help us. A breakthrough came when we discovered that some family members had a rare genetic condition called Ehlers-Danlos Syndrome (EDS). Research revealed that the comorbidities associated with EDS matched my son’s symptoms, particularly those linked to Mast Cell Activation Syndrome (MCAS). This led us to seek treatment across the state and eventually the USA, hoping to find a history of successful treatments.

We eventually found a group of doctors and specialists willing to work with us, and we began to see slow improvements in my son’s health. It has been a long and arduous journey with no easy solutions for MCAS, a comorbidity of EDS. Our lives have drastically changed—we had to adopt new eating habits, install a whole-house water filtration system because my son couldn’t tolerate tap water (he went six months without a bath due to the pain it caused), move across town, and deplete our retirement savings for treatments and doctor visits. The most significant step was calling in home health experts to remediate our house for mold. We had to move out for two months and completely replace our air conditioning system. These changes paid off, as my son’s health significantly improved post-remediation.

Seeing a child in pain for three years is heart-wrenching. Finally, the pain is lifting. He can get out of bed, walk to the mailbox, and even laugh. It’s truly amazing. However, the doctors say we still have about another year of treatment. Unfortunately, our finances are exhausted. We have been extremely careful with our funds, but we can only cover living costs and make minimum payments on the loans and credit card debts incurred for home remediation—debts we didn’t have before.

We have no means to continue his treatments. Please help us get our son the medical care he needs to fully recover. My son is now 14.  He has already had almost three years in bed.  Help him live his life. Please help.

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