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Any sudden diagnosis of your child is devastating, when the diagnosis is rare and only shared by a tiny number of other people either in the UK or globally the isolation and loneliness felt can be multiplied.

When our son, Matthew, was diagnosed with a rare chromosome disorder (Duplication 15q) last year, on leaving the meeting with the consultant at the hospital, the feelings of shock, loneliness and confusion kicked in, making sense of chromosome numbers, karyotypes, sequences, duplications and the reality of the diagnosis itself blew our mind, all behind the biggest question of all. Why?

What was an incredibly difficult period was made easier by Unique (www.rarechromo.org) who helped us with information on the condition, put us in touch with other families affected and made understanding chromosomes that little bit simpler.

Unique offer a support network to families affected by rare chromosome disorders, ensuring that the isolation felt is minimised, that detailed information, support and research is at hand on a plethora of conditions, some so rare they truly are unique.

I am raising funds for Unique so that they can continue their work, that existing members can continue to benefit and those families who will have "the meeting" at the hospital in the future will be directed towards them and their support from day one.

Any donation, however big or small will help make a difference and will be massively appreciated.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.