Pre prem babys that need care for more then 35 hours a week

[Harri07]

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Mobility cars for children1
Today 15:20Harri07

Hi can any one give me a bit of advice please .
Here's my story ........
So in march of this year I gave birth to a pre prem baby , he was 16 weeks early born at 24weeks weighing 1lbs 14oz . Literally 10 months after my 6th child was born I no I'm mad but that was the card I was delt.....
After 125 days in NICU beating all the odds thrown at him I brought my Miracle baby boy home . Hes on a abbots pump feed as hes chambers dont close and eating or drinking could drown him from the inside , hes all so go stage 4/5 rop and at the minute classed as blind , hes also failed 3 hearing tests to is classed as deaf too , he got something called metabolic bone disease too .
He has to attend 4 hospital appointments every week , my partner was working as self employed for a construction company witch was amazing money but because of all the needs my pre prem needs I cant do it on my own (not with children aged between 10 and 10months ) it's in possible I tryed but failed so he has hate to give up work for atlest the next 12 months at least .
We have had no choose but to claim U/C , my son has been rewarded high dla but not the mobility part as hes under 3 😡 witch I think with all his care and appointments is beyond silly, as there rules are they need proof the child cant walk or cant only walk a very short distance. Witch he cant 🤣🤣 . I'm car has just gone to car heaven as the head has gone and I'd need a full new head witch now , I cant afford . For my self to get to all his appointments I'd have to take 5 different buses just to get there and it just not possible, if got no family to fall on or to ask for help and my partner doesn't drive it's only me .
I think it's so wrong they can Penalise a baby that needs the care my boy does . It's not the the car is free you still pay for it as it come out of his money every month but because hes under 3 they dont do it 😡😡 .
It's there any way I can try to get them to look in to this for him or is there any Grant's out there that would help me get a car for his needs , I really dont mind paying for one i just cant get financ on one iv tryed everything I can think of . My friend told me to set a go fund me page but I think its begging and rude 😪 .
CAN ANY ONE HELP WITH SUM KIND OF ADVICE PLEASE. FROM A MOM THAT DONT NO WHAT TO FO NEXT xx

I was in a similar position with ds. He came out of hospital with very high needs and I was having to attend multiple hospital appointments a week which does get really expensive. But you won't be able to claim mobility for it as no child of that age can walk.

Are you getting carers? You may be able to claim back travel and parking expenses from the hospital. You will probably qualify for a Blue badge too.

I'm waiting now for a decision on c/a . It's been four weeks so in the next 4/5 weeks I'm expecting to receive a letter . I can claim for a blue badge also . But think it not worth it if iv go no car xx

Another option is to tell social services your struggling. They may be able to fund a carer for you LO or child care for you older children. That way your partner won't need to give up work. They might be able to fund taxis to hospital appointments as well I'm not sure.