Claire Watson is rare. She is not only rare because she is only 3 ½ feet tall or because she will be turning 12 in March, despite being told she wouldn’t live past her second birthday. Claire is rare because she has taught her family and everyone around her that each day of life should truly be enjoyed.
After a normal pregnancy Susi Watson gave birth to her second daughter, Claire. However, at her three-month check-up the pediatrician noticed she wasn’t developing as she should. They began to see specialists and run countless tests and at five months, the Watson family learned that Claire had Mucolipidosis type II (also known as I-cell disease), a progressively debilitating disorder that affects many parts of the body. They were told that she would likely only live to be two years old. “It was devastating to hear Claire would most likely not live past her second birthday,” her mother Susi Watson recalls. “All you can think is my daughters are supposed to grow up together.”
Upon her diagnosis, Claire’s father, Matt, began reaching out to other resources and support groups. The Watson family continued countless trips to Lucile Packard’s Children’s Hospital and looked into many options, including a bone marrow transplant which could have delayed effects and give Claire a longer life. Yet, after countless hours discussion the different options that would only delay the inevitable, Susi and Matt decided not to proceed with treatments and began their journey of celebrating Claire’s life. Her second birthday came and went, then her third, and fourth, and finally the Watson family threw Claire a big birthday party at age 5. But Claire’s life didn’t stop there. Beating all odds, Claire is awaiting her 12th birthday in March. “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’.”
Although Susi admits it took until about Claire’s fourth birthday to fully accept the circumstances, she also admits it was the best decision she could have made. She began joining support groups and began her search for help with Claire.“It was hard at first,” Susi explains. “People from other states who had children with Claire’s condition went directly on hospice. We were so confused as to why there was nothing like this near us. We asked around and eventually moved on, but it was always in the back of my mind.”
About a year ago, the Watson family went to a Sharks Hockey game and heard that the 50/50 raffle would be benefiting a local organization called, Coastal Kids Home Care. Susi had always been told there were no programs in the bay area for children like Claire, so when she heard that CKHC was a home health care agency for children with serious illness, Susi says it “stood out” to her. “I was shocked to hear that there was an agency providing support for children like Clair,” says Susi. “We had been offered some services by adult agencies, but I would rather be with an agency that is for kids and designed for kids. It feels like home because they know children and understand what parents go through. When an agency has a program for a child, it means they want to be there and they want to help you.”
Claire will never be “normal” by societal standards, but Susi has done her best to keep things as “normal” as possible. Claire goes to school, plays at the park, and even gets a timeout every now and then. Because of this, Susi says you “forget she is limited,'' because Claire wants to do what the other kids are doing.“It is hard to find people to relate to you, but I don't expect them to,” Susi says. “When I see my family, or when I talk about Claire, I don’t see it as difficult. I see it as I am a mom of four, just trying to raise them to my best ability and enjoy every single moment I have with them.”
“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 for kids and designed for kids. It feels like home because they know children and understand what parents go through. When an agency has a program for a child, it means they want to be there and they want to help you.”