Ivy'v Story What care and support is available for those with deletion 22q11 syndrome?


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Rare Disease Day
28th February 2014

Rare Disease DayRare Disease Day 2014 was marked by a series of events around the Uk.

Max Appeal in the News for Rare Disease Day

Members of Max Appeal took part in events in Edinburgh and Belfast to mark Rare Disease Day 2014.

Julie attended an event at the Northern Ireland Assembly, Stormont, Belfast, focusing on 'working together to raise awareness of Rare Diseases' and she spoke about the Max Appeal Consensus Document for 22q Deletion Syndrome.

Sarah and Catherine attended a special event at Holyrood, Edinburgh to discuss Rare Diseases and services and the issues affecting in Scotland.

A story was published this week in the Banffshire Journal, Aberdeenshire promoting the event and raising awareness of 22Deletion Snydrome.

Raising Awareness of 22q DS

Daisy six yearsSarah provided the story of her family's struggle to identify the health issues affecting her daughter Daisy.

After having a diagnosis of 22q DS she found Max Appeal and the help and support she needed.

Sarah says;

"At that point my world closed in on me. I searched the internet once again for information about the syndrome and just found lists of things that it caused. It was a very black picture of learning difficulties and repeated infections. Amongst all this doom and gloom, I suddenly discovered the Max Appeal website. They offered information and advice as well as stories from people a bit further along the journey that we were on. What's more lots of it was positive.......it was a real beacon of light".

Invaluable help from Max Appeal

daisyfamilySarah says;

"Sarah says that Max Appeal has been invaluable, initially with information and guidance and then conferences. Also, one weekend, Daisy and Sarah joined eight other children with 22q and a parent on an outdoor activities weekend at Keilder, organized and paid for by Max Appeal.

Sarah says 'It was one of the most refreshing, relaxing and inspiring weekends of my life. I didn't have to pretend anything, this was us, all our struggles and all our joys over the most trivial things, just laid bare and everyone just understanding where I was coming from - such a relief to realise that we weren't completely isolated'.

Your Story

We would love to hear your story and how Max Appeal has helped your family.