Support for parents who have babies/children with a Rare Disease

[MikeCain123]

I have a rare disease and what is not appreciated is that a baby with a rare disease completely disrupts family life.
The baby is ill and takes a long time to be diagnosed. Meanwhile anxious parents want an answer and the child is growing up. Too anxious and you are considered a nuisances and not listened to, not anxious enough and you may not be listened to.
Social life may be disrupted as 'friends' find excuses or other commitments. Economic life can be devastated as child friendly building work costs a lot and you may even be needed to move home.
Family life can be disrupted as other children have needs and parental input.
As the baby grows, Schools, transport, child care all occupies time. Parents are not supported.

There are some who have access to money, but there are also a lot who have none and so have nothing to ease the disruption.
Why??

You have my sympathy. I'm an adult born with a rare disease. Been told I may never get an answer as to what it is.

I have a rare disease & so does my DD. I've largely stabilised my symptoms but she's been particularly ill for the last 3 or so years. Her diagnosis was easier to achieve as I knew the game & which hoops to jump.
I had hoped to start working part-time this year but she's only able to attend school about 50% of the time & it's unpredictable when she's well enough to be in so it's impossible right now.
She's lost friends, I've lost friends. She's not living life like a normal child & it's heartbreaking. She needs MH support, as do I, but it's so very hard to access - this is the biggest change I'd make, MH support should be offered much earlier in the illness.
But don't get me started on teaching consultant's the importance of actually educating themselves about something they know nothing of!

Apologies if I'm telling you what you already know, but the Genetic Alliance may be able to offer support - geneticalliance.org.uk/ - and EURORDIS, the European Rare Disorders organisation - www.eurordus.org - have international groups that you may be able to link in with. I hope your rare odyssey isn't too long or lonely. 💛

Sorry, typo, that should be www.eurordis.org/