[ Post a Response | 22q Deletion Interest Board ]
Posted by Nancy
on 1/28/2008, 10:02 am, in reply to "22q11 member from UK - Thought I'd share my Story."
98.193.126.124
--Previous Message--
: Hi, Thought I'd share my story. I
: found out that I had 22q11 when I
: was 19 and had a test done. I was
: born with a congential Heart
: Condition called Tretalogy of
: Fallot, which is not suitable for
: surgery for the life risk to high.
: I've also got Scholiosis now
: corrected. I have a Cleft Palate and
: a double Uvula. I was due to have
: corrected surgery on that but have
: got a large vein at the back of the
: throat made difficult for surgery. I
: was fitted with a brace to improve
: my speech but found it
: uncomfortable. Speech not to bad
: unless I have a cold. I have found
: it difficult to swolle things as a
: baby. I have clubbed fingers and
: neckI was having speech therapy at
: school and passed my exams and now
: in employment. I find remembering
: things hard to do and have to write
: things down and sorting out things
: on the phone and filling in forms a
: struggle my parents and carers help
: out. I'd like to hear from some one
: soon.
:
Hi Lisa, I am a mother who has a son that is 7 years old with 22q11.2 Deletion. He was born with Tetralogy of Fallot with an absent pulmonary valve. He has had 5 open heart operations. He has had intensive speech therapy and can talk, but to some he is unintelligible. He has other symptoms too: mild hearing loss, loss of the mandibular nerve on the left side of his mouth, a small throat, and small broncials. He has trouble with his lungs because of this and currently has something called pulmonary hypertension, which means that he has high blood pressure in his lungs. He alos has digestive problems, scoliosis, and we are just learning that he has learning problems. He has a learning problem called Non-Verbal Learning Disorder, which means that he has trouble writing, trouble visualling in his mind, trouble appying one situation to another. I hope this helps you. If there is anything else I can help you with let me know. Nancy from Indiana, USA
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