Health

Diane tells the story of her first NCL congress and how difficult it was even to take notes. Regardless, the conference was helpful and allowed Diane to see where the priorities surrounding NCL were. She was thankful to see that there were so many people looking for solutions, while they also treated her with kindness.

Diane shows the orthotics that Carling and Colton used on their hands and feet. They helped to keep them growing in the right way. Instead of orthotics, the family called them “magic mittens” and “magic boots.”

The journey to Sick Kids, which became the family’s medical home, was not an easy one. There were many steps along the way!

Carling’s first time in intense, acute care was when she was only 18 days old, years before any symptoms of the NCL disorder would manifest. Having doctors take a second to explain the situation was so important to the family.

Diane talks about how naive she was when she started out on this health care journey, thinking that getting a urine sample from a baby was the most complex thing in the world. Little did she know how much Carling would soon teach her!

Diane talks about how essential janitorial staff were to protecting her children from harsh chemicals and scents when they were in the hospital. They went above and beyond and showed deep awareness and kindness.

Special Services at Home (SSAH) sent Diane at letter that updated their funding processes. Because the family had been receiving services for so many years, they no longer had to go through a huge process to reapply. This saved time and effort for Diane, while showing that the people behind the scenes are thinking and … Read more

TIME Magazine ran an article about the Upledger Institute that discussed the benefits of craniosacral massage. This article ultimately led to Diane finding Kathy Winter through a coworker, and she ended up becoming the family’s naturopathic doctor.