<div>The Chace/Vieira family was blessed on March 4, 2025 when <strong>Declan Chace </strong>was born.
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<div>Unfortunately, when Declan was born he experienced respiratory distress, which can be a common problem with early deliveries. At first, the medical team thought he had a respiratory infection. He then got worse 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 his home, as well as home for his parents, Jacob and Michaela, since one of them is always by his side, 24 hours a day. They have not lived in their home since Declan was born, because it’s too far away from the hospital.
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<div>Declan has progressed from respirator dependent, to CPAP and is now on continuous high flow oxygen. He is still not able to safely breathe on his own.
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<div>From a newborn genetic screening, our family learned that Declan was diagnosed with <strong>Mucopolysaccharidosis</strong> <strong>Type I (MPS1)</strong>, better known as Hurlers Syndrome. This is a rare, devastating genetic disease that eventually causes damage to all the organs of the body, especially the brain, bones, hearts and lungs of those who suffer from it. Children with Hurlers who go untreated have short life expectancies and have to undergo numerous painful surgeries and procedures, but there is <strong>hope</strong> and the key is <strong>early treatment</strong>.
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<div>One such treatment is a <strong>bone marrow transplant</strong>, which will slow the progression of the disease, and especially prevent damage to the bones and organs. A newer treatment is called <strong>gene therapy</strong> and it 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 for Declan.
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<div>Jacob has 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. With a high risk son, she will need to stay by his side and will be unable to work for some time to come.
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<div>When the time comes for his intensive medical interventions, Declan will need to be med flighted across the country, since his respiratory condition is too fragile to fly commercially. After a bone marrow transplant, or gene therapy, he 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.
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<div>For all of these reasons, our family needs a lot of emotional and financial support. We, their family, are with them every step of the way, but we desperately need your help too!
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<div>Please help Declan to not only survive, but to receive these lifesaving treatments in time to be able to grow and develop into a healthy young man someday. Open your hearts to our sweet baby boy Declan.
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Lynda Pacheco

Jeanne Loranger

Stacy Quintin Parys

Matthew Tsebetzis

Jane Barboza

Anonymous

John Correia

BRYAN COTE

Faith Kuszay

nancy Elmon

Christina McCartin

Elizabeth O'Loughlin

Lori DeSousa

Shianne DeOliveira

Kathryn Brady

Robin Alves

Bianca Ianiero

Annette Bedard

Julie Guerette

Help Support Declan’s MPS 1 Journey!

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