Siblings of terminally ill children need more support to deal with loss, said the founder of a support website who presented at the 15th Annual WorldSymposium for lysosomal disorders, which includes Sanfilippo syndrome.
When a child dies from an illness, “the loss is rarely discussed, and siblings are often overlooked,” said Grey Chapin, 15, the youngest presenter at the symposium, held in February in Orlando, Florida.
Chapin’s sister Blair was six when she was diagnosed with Sanfilippo and died at age 15 in 2017. Chapin’s research turned up a dearth of emotional support programs for siblings of the terminally ill. So she founded a website called the B.L.A.I.R (Brave, Loving, Amazing, Inspiring, and Relentless) Connection, which includes posts by siblings from all over the world, plus support resources, and pertinent articles.
“I thought that a website where young people could interact and share their stories of the challenges and feelings around growing up in a household with a dying brother or sister might help,” Chapin said in a press release. “In less than a year, we’ve had great success with contributing blogs, stories in the press, and general awareness that such a website exists.”
“Living in Orlando, I was fortunate to meet dozens of other Sanfilippo kids,” Chapin added. “Most of the kids were visiting for their ‘Make A Wish’ trip, and we always found ways to connect, which often included the entire family.”
Siblings of terminally ill children often experience anxiety, depression, attention problems, and lack of closure as adults, she said. To make matters worse, most healthy siblings don’t want to be an added “burden” to parents who are already taxed physically, emotionally, and financially.
“By bringing sibling support to people’s attention, hopefully more support will be created for siblings,” said Chapin, who intends to raise awareness through blogs, social media, and presentations at events such as WorldSymposium.
“I had the opportunity to speak in front of doctors, scientists, and lysosomal disease families about sibling support,” she wrote in a blog post — which includes a video — of her symposium presentation on Feb. 4. “In the presentation, I share more about my journey as a sibling and my inspiration to start this website.”
The annual meeting is billed as the largest lysosomal meeting in the world. This year, it attracted more than 1,800 attendees from 50 countries. Attended by physicians, scientists and foundations, it’s a forum for the presentation and discussion of cutting-edge science in all areas of lysosomal disease research.