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10q26 deletion syndrome

Hi all, my beautiful 11month old grandson has very recently been diagnosed with 10q26 deletion syndrome, we are still waiting for an appointment for him with the specialist, the wait is awful as we need answers to how it is going to affect him and what the future holds etc....not sure whether we will be told how much he is affected and if we will get any anwers to what his future holds, any help and advice from others in the same situation would be most grateful received.



This discussion is related to chromosome deletion.
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Hi, maxsnanna. I am wondering if you wouldn't mind providing an update as to how your grandson is doing and what his progress has been like. My 8-month-old daughter has been diagnosed with the same deletion and we would also be very grateful for any insight from your experience. Thank you for your time and hoping for the best for your grandson.
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Hello... my daughter is 33 months and was diagnosed by her geneticist with 10q26 deletion when she was 5 months old. We are currently completely tube feed, gastric motor dysmotility, strabismus, cleft palate, low set ears, severe oral motor apraxia, FTT, global developmental delays, never crawled, not walking but just started cruising, babbling but not talking, etc. Ive been told this deletion was super rare. I would love to find more people/ parents/ etc.. to connect with.
Hi, My son Ashley has a 10q deletion and has just reached his 29th Birthday. He was born with cleft palate, Hypospdias, Club feet, poor fine motor skills,  the list goes on.

He is now a fully grown man in a 12 yr olds body in terms of physical size, With the mental capacity of around 8/9 yrs.

He requires 24hr support, I gave up work 15yrs ago to become his full time primary carer. I also have a local authority respite team that take him to day centre 5 days per week and take him one weekend day to allow me respite.

Despite his disabilities, he is an articulate intelligent young man trapped in the body and mind of a young child. He has incredible numeracy and spelling ability, better than many adults but lacks in all other areas.

He also has a profound speech impediment following the cleft repair but is understandable to those close to him or will sign or write down for anyone who cant understand him.
Avatar universal
There is a Facebook group for 10q chromosome deletions. My daughter is almost 16 with this deletion. It is has been a great group of people to bounce ideas off.
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