This means we have had to spend all our money on getting air conditioning in each house we have lived in, trading in cars for ones with reliable air con, and ensuring the school and any homes she visits are adequately cooled 'just in case'.
We are also lucky enough for my husbands father (my father in law) who is aged and frail, to live with us in his last years - and Lexi LOVES seeing him every day now he has shifted in.
I work full time (50 odd hrs a week) and my husband looks after both our daughter and Pop, on top of working part time 25 hrs a week to help with the bills.
We are planning to go on a family holiday for the three of us , (Pop is too frail to travel with us and he will have family staying to look after him in our absence) in September 2015 to the USA, and were well on track with our savings, but Pop became unwell and we had to sell both his house and ours to buy a bigger one to fit him in to live with us, and our money went all into it. Over the last year we have had to repair both my husbands car, and now mine, so there is simply no where near the funds to make this now happen.
Lexi is due to have 'Spinal fusion surgery' soon (when she is 10) where they put rods in her back, and take out a part of her hip bone and fuse it into the spine, and one of us is going to have to be her full time carer for potentially 6 months whilst she recovers and goes through rehabilitation ( and home schooling) etc. With both my husband and Pop both being deaf, this means it must be me (if she needs help and calls out during recovering period he simply wont hear her) so if we dont do it now we wont be able to take her on holiday to experience a bit of the world before it becomes very limiting and small to her.
Lex dreams of going to the USA (specifically LA and Forks - She is 'team Jacob', I 'team Edward') and she wants to see the 'Stars on the ground' (Walk of fame).
Now we are being realistic with this aim, its all economy flights, budget hotels, and little to no spending money. But it will be worth it - SHE IS WORTH IT!
So swallowing our pride, we ask: can you help?
The government wont help us, because we both work, and despite having 2 deaf people living with us and a daughter with a disability we even have to fork out the full cost for items such as strobe smoke detectors ($2300), they wont let us claim any of the costs associated to our daughters cost such as ducted air con installation etc, and we have never asked for a thing in our life. But Lexi is worth it. You dont know if you dont ask right?
Thank you for reading. I hope you can help in any little way possible, and we look forward to sharing Lexi's journey with you!
Mum and Dad (Ruth and Stewart) and Lexi.
If anyone wishes to contact us, our email is [email redacted]
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