hi. my name is rachel. my one year old daughter was diagnosed with neurofibromatosis at nine months. i have spina bifida and no friends. anyone there? ↓
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i can be reached at [email protected] ↑ |
hello, my daughter and myself have neurofibromatosis ansd scolliosis of the spine, ↑ |
do y'all have nf1 or 2? my hubby and daughter have nf1 and hubby also had scoliosis but had a rod put in when he was six. ↑ |
Hi rachel. You can e-mail me at [email protected]
Cindy ↑ |
hi babyhuie61. i've seen u in other posts b4. ↑ |
Hi mspeachpit. It is very nice to meet you. ↑ |
u can call me rachel if u want. ↑ |
by the way, what is 22q13? ↑ |
Hi Rachel. I am glad that you don't bite,lol. That might hurt. Anyways 22q13 is the 22nd chromosome quadrant 13 of the long arm. It is a chromosome problem. A piuece of the long arm fell off when I was pregnant with sarah. Unfortunately, that particular chromosome is responsible for your fine and gross motor skills. It was a rare syndrome when sarah was born 15yrs ago. Now it is starting to come out more and more. it affects each individual differently. It is not genetic. It was just one of those things that happened.
Cindy ↑ |
what kind of problems does it cause? ↑ |
Hi Rachel. It can cause alot of problems. Some of them include not talking, not walking, some can not feed themselves, others will never be toilet trained. It affects kids mentally and physically. Sarah needs alot of care. She does help out alot and can do a few things for herself.
cindy ↑ |
well, thats a good thing, then. ↑ |
Hi Rachel. yes it can be a good thing. Where are you from?
Cindy ↑ |
I am in Hamilton, Ontario, Canada. ↑ |
boy, we're pretty far apart, then! its neat to be able to talk to someone not in ur immediate area. by the way, what caused the head injury u said she got at school? ↑ |
What caused sarah's head injury is that she fell on her right side right onto the hard concrete.
cindy ↑ |
omg. thats awful. was it an accident or did someone push her down or what? my older sisters name is sarah. lol ↑ |
Hi rachel. it was an accident. that is what they say anyways. ↑ |
its not like anyone would admit it if it was anything other than an accident anyway, right? ↑ |
Hi rachel. You got that right. the problem is I will really never know the truth. ↑ |
well, sometimes the truth is better left unknown, u know? ↑ |
if it had been my child, i wouldnt want to know if someone had been mean to her on purpose. ↑ |
Hi Rachel. I hear ya. I would not want to know either. ↑ |
mspeach pit my cousin and ant both have spinal bifida. Not fun I'm sure. Rachel you and I seem to be going through quite a bit just now. I know your going to be laid up with sergury and all in the next coming weeks. If you would like you can E-Mail me any time at [email protected]. My name is Tara, I'm a very good listener and would like to be your friend. I hope to hear from you. If not take care and I'll chat with you on the SAHM forum. ↑ |
Hi, Tara. I have added you to my email address book. ↑ |
hello again, its been a while since i last came in. ↑ |
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