NF1

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Rebekka - posted on 09/19/2014

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Thank you for your well wishes...Yes, I have found that the only thing that brings me comfort is my faith in God, trusting that He loves our child and holds her in His hands. We don't know what the future holds for anyone - this is just a reminder of our human fragility...Prayer is definitely the antidote to fear and anxiety:)
All the best to you and your family!!!

Lori Ann - posted on 09/19/2014

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Thank you so much Rebekka. We first noticed the CALs when she was 18 months old and just in the last few weeks with the appearance of the axillary freckling we did the genetic testing and found that she in fact does have the mutation. She does not have any speech issues or bone malformations. We will be seeing the opthamologist in 2 weeks and the neurologist soon there after. I am trying not to think the worst becasue as of right now, you would never know she has it outside of the CALs and freckles under her arms. She is a twin and her brother does not have any symptoms at all. But since she is a twin I can gauge where she is on the learning scale with him. She is behind him a little bit but nothing too noticeable. I am praying that she has a very mild version of the disease as statistics show that most of the cases are minor and what is reported on the websties is more the severe, rare, cases. Thank you for your support.
I hope your daughter continues to do well, she sounds like a super sweet little girl full of life and fun.

Rebekka - posted on 09/19/2014

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My daughter (now 11) was diagnosed with NF1 when she was 2. She has had very few obvious problems - some minor speech issues (air leeks through her nose when she speaks, although it's not very noticeable), minor scoliosis (not enough to do anything about it), and some coordination issues (e.g. would confuse her right and left shoe, now it's fine). She does well in school, has a wonderfully enthusiastic but definitely unique personality (which we love, most of the time:)) and we are very blessed with her. We take her for annual MRIs to monitor her brain and any changes there and keep her vision in check (she wears glasses). I want to encourage you! When we found out I was devastated and didn't know what to expect. NF1 varies so much from person to person, but don't assume the worst! And don't look at websites too much!

Lori Ann - posted on 09/19/2014

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my 5 year old daughter was just diagnosed iwth NF1. Our genetic testing was confirmed today. She only has CALs and axillary freckling. I am just in shock and not sure what to expect or how to maintain normalcy while we wait for any new symptoms.

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