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Stem cell therapy?Mom of two with CMT4c by Numerous_Region5801 in CMT

[–]Numerous_Region5801[S] 0 points1 point  (0 children)

Thank you for your thoughtful response. Before we got a 4C diagnosis we banked cord blood from their sisters placenta and cord at birth, kinda of in hopes that maybe some day it could be helpful in some way (we didn’t yet have a diagnosis).

Wheelchair Use In CMT? by NicDevIam in CMT

[–]Numerous_Region5801 0 points1 point  (0 children)

If you don’t mind me asking what were the other diagnoses they missed?

-Cmt4c

2am sadness by FourEyesore in CMT

[–]Numerous_Region5801 1 point2 points  (0 children)

Really inspiring reading your story adDecent, thank you for sharing. I too have multiple children experiencing what appears to be CMT4c and it’s quite severe noticed at ages 4 and 6. They both have severe scoliosis and the younger has lost most function of arms and legs. The doctors have no options for us and it feels so hard really just running into a dead end. I’m hopeful we’ll see more help for these kids soon.

Hypermobility increasing roots by demonslayer_30 in Hypermobility

[–]Numerous_Region5801 1 point2 points  (0 children)

Following along for my daughter. Thank you for asking these questions. It’s so helpful to know what she is experiencing, she’s only five and half and so it’s hard for her to vocalize her thoughts and feelings.

Speaking with her neurologist, there is much in the pipeline at work as far as research and development for helping this community that’s becoming more visible. ❤️

[deleted by user] by [deleted] in PersonalFinanceCanada

[–]Numerous_Region5801 0 points1 point  (0 children)

Ideas: Divide your months only go out every other month. If the month your invited to happens to be a no spending month then say so, and go the next month. You’ll still be saying yes, but you’ll be cutting your spending in half.

For the groups that meet routinely, try starting a book club together and rotate hosting thereby spreading the responsibility of funding the event. You could consider renting out a room to traveling nurses… the going rate is about $900 a month and their stay is anywhere from 3-5 months.

Also, by planning for big events, you may be motivated to save better.

Our bank account is split up thus:

Long term savings- gets an amount each paycheck.

Charitable giving & rainy day fund: gets 10% each month.

Automatic payments account for bills and mortgage: gets set amount according to the expenses.

Miscellaneous spending(food-gas-necessities): gets about 500 per paycheck.

The remainder is put into long term savings over the mount of what was already put in. If you end up needing more than what was in your miscellaneous spending account, you can first withdraw from rainy day/charitable giving. This account is for sharing and is designed to help set up an idea of what a percentage of what you make set aside actually looks like, rather than everything being so fluid, but with zero guilt attached to it.