Dartmouth family receiving community support after newborn’s devastating diagnosis

A Dartmouth family is taking a terrible diagnosis and facing it head on.

Jacob and Michaela were blessed on March 4th when Declan Chace was born, however, once Declan arrived, he immediately experienced respiratory distress. At first, the medical team thought he had a respiratory infection, but he continued to worsen and required a respirator to breathe. He was transferred by ambulance from the community hospital where he was born, to a regional Neonatal Intensive Care Unit in a nearby state. This NICU room has now become the family home, since one of his parents is always by his side, 24 hours a day. They have not lived in their home because it’s just too far away.

Jacob recently returned to work and commutes back to the hospital to be with his family at night, because his paternity leave is limited. Michaela has dedicated herself to caring and advocating for their son at the hospital.

From a newborn genetic screening, it was learned that Declan was diagnosed with Mucopolysaccharidosis Type I (MPS1), better known as Hurlers Syndrome. This is a rare, devastating genetic disease where there is an abnormal build-up of various toxic materials, affecting the organs of the body, especially the brain, bones, heart and lungs. Children with Hurlers who go untreated have short life expectancies and have to undergo numerous painful surgeries and procedures.

Despite the diagnosis, Michaela has an incredible outlook on the situation.

“I want to thank everyone for all the love and support they have provided to us as we navigate our son’s diagnosis and future. I can’t remember a time where I didn’t want to be a mother. I feel as though I was destined to be a mother, destined to be Declan’s mother. Declan has taught me so much in just the few short months he’s been with us. He’s taught me to be strong, he’s taught me to advocate, and he’s taught me that love, above all else- heals.”

Despite the difficult diagnosis, there is some hope.

One such treatment is a bone marrow transplant, which will slow the progression of the disease, and help prevent damage to the bones and organs. A newer treatment, gene therapy, shows great promise to cure this illness if given at a young enough age. Jacob and Michaela will have to travel across the country to a hospital in Minnesota that specializes in MPS research. After a bone marrow transplant, or gene therapy, Declan will need to be quarantined due to a low immune system and a great risk of infection. As a result, neither parent will be able to work for months.

While Declan’s extended family has created a GoFundMe fundraiser to help, prayers are also appreciated.

We all wish Declan a speedy recovery.