#416
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I am mum to 4 . My eldest Matthew is 20 and has ADHD but has a good career and has recently moved in with his girl friend. Bethany is 16 next week and a typical teenage girl. Elly is 12 and has Cerebral Palsy,Von Willerbrands Disease and
Gastric Reflux she is a wheelchair user but is very bright and attends main stream high school. Jack is 21 months and has major undiagnosed problems. He is registered blind and has Microcephaly and is gastrostomy fed. He can not roll over, sit crawl or weight bare. He recently had fundo surgery which has greatly improved his reflux. He has never slept for more than 2 straight hours in his life so we are constantly tired. However he is the happiest smiley boy in the world. Would love to chat to any one who can relate in any way as genetics and neurology cant come up with a diagnoses x
Life is not about waiting for the storm to pass, but learning to dance in the rain .....
#417
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hi everyone, i am a mum to 2 children the younger one is 5 months and 'normal' so to speak, my oldest is 2 and has undiagnosed problems - suspected mitochondrial condition but all tests (muscle biopsy, skin biopsy, endless blood tests) have all come back negative. Been told he has global cerebral atrophy in a previous mri and waiting for the results of the latest one. he has constant myoclonic seizures which are not well controlled by clonazepam and keppra which he is taking, terrible reflux whis has now suddenly resolved (after solving his tummy problems!!) has a gastrostemy due to swallowing difficulties, cannot walk, talk, crawl or roll, doesnt atm reach out for anything, and not really sure whether he smiles because of pleasure or a result of seizure activity. however hes absolutely gorgeous and loves cuddles, and we all love him to bits!
#418
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HI there... our twinnies both have 22Q11.2 deletion or digeorge syndrome or VCFS lol what ever u wanna call it. Can be pretty challenging at times... we have 7 kiddies altogether, the twinnies are the 2nd youngest.
#419
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I have four children, 1 boy and 3 girls.
Jack has cerebral palsy, ( quadreplegic), he also has epilepsy.
He is an amazing little boy.
#420
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my son has just been diagnosed with POLYARTERITIS NODOSA im not really sure about what this involves yet


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