Child/ren Name/s: Morgandie
Chid/ren DOB/s: March 13th 2007
My Child was fighting: 12 month fight against Neuroblastoma, a childhood cancer.
Any extra Info: Treated by Gt Ormond St. She's clear for now (and hopefully will stay that way), but am happy to provide any support to any parent coping with a childhood cancer. We have check-ups every 3 months.
Child/ren Name/s: Jessica Norma Margaret Perrin
Chid/ren DOB/s: 4th June 2008
My Child has: Fibular Hemimelia
Any extra Info: Jessie will be having an amputation (from just below the knee on her right side) when she is around 10-12 months old. Hopefully performed at Stanmore orthapedic hospital. She will then have a prosthetic lower limb fitted.
Childs Name: harry allison
Chids DOB: 3/9/2008
My Child is fighting: is being tube feed via pump every night and not growing well he is 10 months and not sitting up and has to be on milk free diet and suffers with exmar
Child/ren Name/s: Oliver David
Chid/ren DOB/s: 04/06/09
My Child/ren is/are fighting: Sluggish heart valves, thickening of the chamber walls, heart murmur, tissue disorder and lung problem.
Any extra Info: Oliver is yet to have his tissue disorder and lung problem properly diagnosed but it is thought they are both linked to the thickening of his chamber walls. We await an appointment with a genetisist. He is also slow to develop and has had faliure to thrive.
Location: Aberdeenshire (originally from South of England)
I hope it's ok for me to join
User Name: Lottie86 Name: Lottie
Child's Name: Findlay Findlay is: Almost 14 months old Findlay has: a very rare chromosome abnormality (he has a duplication on 12q), milk protein allergy, epilepsy and we are working hard to overcome oral aversion
Any other info: Due to his chromosome disorder he has muscle tone problems (which caused very severe reflux which required surgeries to fix), his internal muscles are also poor and so he is on medication 4 times a day to make his stomach empty and has to be on at least 2 different laxatives twice a day as he cannot poo otherwise due to his bowel muscles not working properly, he has feeding problems (he is fed via gastrostomy tube), severely delayed development, sensory issues, poor weight gain and he has a variety of types of seizures. By the time he was 6.5 months old he had spent over 4 months in hospital. As the chromosome disorder he has is so rare we don't know what the long term prognosis is.
He has a fabulous team of speech therapists, occupational therapists, physio, developmental consultant, dietician, GI consultant, neurologist etc though
This is my very special tiny man (he is now 12lb 10oz!)
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