Help for parents worried about their child’s development
It’s always a scary time when you realise your child isn’t developing at the same rate as the children of other parents you know. Sometimes it’s obvious, other times it’s …
Category: Rare Disease
The parents working to find a cure for deadly Sanfilippo syndrome
Jonah was born in 2008 to excited parents in New York City. But at his first year check up, his pediatrician noticed his head circumference was large for his age. …
How growing up with disability can lead to a life of compassion
We often wonder at SNJ, as we all must, how our children with chronic illness, rare conditions or additional needs will cope when they are adults. How will their difficulties …
Why online help is vital for people living with a rare disease you can only smell
We hear a lot about “invisible illness” and how young people with autism are judged or stared at because of their behavior. But what if your teenager’s illness meant they …
Our son’s rare disease sparked a search for answers- and support
Tania writes: I am often contacted by desperate parents searching for help with finding the special needs solutions for their children. It’s something that Helen never imagined herself having to do. …
Raising awareness of children’s conditions so rare, they’re undiagnosed.
Tania writes: Recently, when Debs & I went to Westminster, we met Renata Blower, a Mum who blogs about her life as the parent of a child with an undiagnosed …
Rare Disease Day: My son has Retinopathy of Prematurity
Today, 28th February is Rare Disease Day. It’s an awareness raising day for the millions of people around the world who are affected by rare conditions. Most suffer from lack …
Rare Disease Day: How Dan’s rare disease didn’t stop his mainstream education
Rare Disease Day is at the end of February, with the theme ‘Disorders without Borders’. In Europe it’s coordinated by EURORDIS, the European Rare Diseases Organisation. Many children have special …
Doing your best is all you can do
Today I’m feeling a little sad. Youngest is off school again with joint pains in his legs. We’ve just been for a blood test and he is awaiting an appointment …
Volunteering: The best way to spend your summer
Tania says: We’re heading off for Italy this weekend and because both kids are autistic, we’ve always rented a villa with a pool and taken their Grandma and Nonno along …
The lifetime legacy of special needs left by meningitis
I recently met the chief executive of The Meningitis Trust, Sue Davie, and heard her talk about the hidden after-effects that meningitis can leave on children who’ve apparently recovered. The …