Help for Harvey and Elliott

Hi my name is Faye, I am a lone parent to three children, two of which have recently been diagnosed with a rare condition called Non Syndromic Craniosynostosis. This condition affects the growth of the skull and brain pressure as their sutures (seams of the skull) were not formed correctly in the womb. Unfortunately Harvey, my 4 year old has gone undetected his whole life up to attending an appointment of Elliott’s with me which does mean he will now need to have a full reconstruction surgery on his skull. Elliott is 5 months old and has just under gone Vault Remodelling Strip Craniectomy and Bilateral Microbarrel Staving within two weeks of being diagnosed. I have no local family support or transport which has made this situation even more difficult to deal with. I am currently on maternity leave from work but I earn a few pounds too much each month to qualify for help with travel costs. My maternity is due to run out in just two weeks and I have no option but to take unpaid leave whilst my baby recovers. I have applied for financial help however with them both being under age 5 it doesn’t look as though there will be much help for us there either. Each hospital visit has cost me between £500 and £1000 due to travelling and having to live out of hotels for outpatient appointments. They can only be treated in Alder Hey specialist hospital which is 200 miles away from our home as local hospitals do not have the facilities, training or knowledge about this condition. Meanwhile still having all of my bills to pay back home. The hospital have a policy for one parent to stay on the high dependency unit with the child at all times making it almost impossible for lone parents. Elliott was found to have all of his sutures fused whilst they were operating which sadly does mean further operations for him and Harvey is also due to have his surgery pending a date after Elliott has recovered. Lots of follow up appointments will be required also visits to Psychologists and speech and language therapists. Not forgetting childcare I will need to arrange for my nine year old daughter whilst all of this is going on. To make matters worse I also live in a flat which has a flight of stairs in the entrance. I cannot afford to rent a suitable home privately due to the soaring cost of housing I have applied to be rehoused to make this time easier for us as a family however we are only in priority band 2 as we do have somewhere to live and everything is a waiting game, however time has not been on our side so far. I understand that times are hard for everyone right now and any help at all will be so much appreciated. If you know me personally you’ll know how hard it has been for me even to choose this as an option but at the moment I really can’t see another way.