Mucolipidosis type I
When Claire Watson was only five months old, she was diagnosed with Mucolipidosis type II (also known as I-cell disease), a progressively debilitating disorder with profound medical and developmental impacts. Her parents, Susi and Matt, were told that she would only live to be two years old. However, her second, and third and fourth birthdays came and went, and Claire thrived. Growing to only 3 ½ feet tall, her small size and unique appearance meant she made a big impact on whoever she met.
Claire defied all expectations and reached her thirteenth birthday this spring. Her mom reflected, “I am so proud of [Claire],” Susi says. “She is resilient. She has made me compassionate and has taught me to smile and laugh a lot. We know that she won’t live to see her 20th birthday, but she has taught me to not live life with ‘What ifs’.”
Along their journey, after hours of discussion, Susi and Matt made the deliberate choice not to ask their precious daughter to undergo any more painful procedures. Instead, they opted to celebrate her life and encouraged her to share her light with the world.
Enter Coastal Kids Home Care. A fortunate encounter at a Shark’s Hockey game in 2019, led Susi to reach out to learn more about the pediatric home health services available to Claire. “I was shocked to hear that there was an agency providing support for children like Claire,” says Susi. “We had been offered some services by adult agencies, but I would rather be with an agency that is designed for kids. It feels like home because they know children and understand what parents go through.”
Soon, the Watson’s learned that Claire qualified for the Pediatric Palliative Care and Shift Nursing programs through Coastal Kid. With 40 hours a week of LVN shift nursing, Claire could have a familiar nurse care for her at home and join her in school. She soon charmed Ann Do, LVN and a special friendship formed between the quiet nurse and boisterous kid. The Palliative Care program offered wraparound services for the whole family. Claire found her inner rockstar in Music Therapy with Daniel Le and her parents and siblings connected with Ruth Emerson for counseling.
Sadly, this past September 2021, Claire passed away. When her light went out, the world lost an extraordinary presence. She is missed by many, especially her Coastal Kids Home Care team. Fortunately, a beautiful portrait of Claire in our new office space reminds us of her bright spirit every day. Her parents generously asked their family and friends to donate to Coastal Kids in Claire’s memory too.
The Watsons remain connected to their Coastal Kids counselor, according to Susi, “I had healed some during the time we were working with Coastal Kids because I was able to reflect on how life might look after she passed” says Susi. “The team prepared her brothers and sister to understand that something could happen. Our family is doing fine, but we have our moments. During those moments we talk about Claire and share memories." Claire continues to light up the lives of all those that she touched.