Unique are an incredible tiny charity that are very close to me and my family. They provide specialist information and support to families coming to terms with the diagnosis of rare chromosome or gene disorder and to the medical professionals caring for them. 

My beautiful niece Ayesha was born in 2018. She was an absolute joy. We were all elated. As Ayesha started to grow it was becoming clear her development wasn't quite at the same rate as other babies, but how much can you really know at a year old?

Ayesha has parents that love her so much and did absolutely everything right in that first year, but late in 2019, only months before we went into the first lockdown, Ayesha’s parents received a letter with a diagnosis of the rare chromosome disorder 18p deletion syndrome. Life altering news by a letter which contained almost no information about how this syndrome might impact her life.

Imagine having a baby, realising something is wrong and then receiving a diagnosis of a chromosome or gene disorder, only to be told by the doctors that they don’t know what the future holds and can’t answer your many questions as they haven’t even heard of the disorder themselves!

That is where Unique came in. After Googling to find out what this syndrome was and what it meant for Ayesha, her parents came across a disorder guide for 18p deletion which answered so many of their questions. Unique also connected them with other families that have a member with 18p deletion and through them, more of their questions were answered.

For so many families like Ayesha’s, Unique’s support guides, groups, specialist advice and connections can help to dispel at least a tiny bit of the worry. Unique do a wonderful job but they can only do what they do with donations. They are a genuinely tiny charity that make all of your pounds stretch. Often Unique are the only place a family can go to for support.

Our Ayesha is a personality! She loves books more than any kid I've met, Thomas the Tank Engine, monkeys, she's communicating with her favorite words and her parents will never let her be denied any experience. Ayesha is incredibly lucky. Her parents are educated, comfortable, completely adoring of her. But not every child diagnosed with a rare genetic disorder is quite so lucky. That is why Unique's work is so truly important.

Thank you for stopping by, anything you can donate is hugely appreciated. Tips/inspiration/recommendations for running or waddling 26.2 miles are very welcome too!

For more info about Unique you can visit them here: 
Unique | Understanding Rare Chromosome and Gene Disorders

For more about Ayesha you can find her story on Instagram: @ayeshas18pjourney