Lucy has a rare condition called Chiari malformation that was diagnosed in 2016 when pregnant with the youngest of our three boys, after constant migraine-like headaches, I lovingly refer to this as "squidgy brain" in short it is a serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine causing many symptoms. We have stopped counting after we went above 25 different symptoms which run from head to foot, including constant pain, vision, memory, motor skills, weakness in all limbs, nerve, coordination issues and chronic fatigue.

Our family life has drastically changed over the last few months, in August we were the same as every other family having a holiday at the beach walking along the dunes, flying kites and building sandcastles. Now our days revolve around trying to make Lucy as comfortable as possible with the help of the fantastic team of carers from Bluebells, whilst we wait to see if decompression neurosurgery can be performed to slow the progression and deterioration of Lucy's quality of life, meanwhile, we are looking into further diagnosis's that may explain the full extent of what's going on such as Ehlers-Danlos syndrome.

For the last three-plus months lucy has lost the ability to walk or stand aided for more than 30 seconds, I have been carrying her up the stairs to get to bed and for a shower using wheeled commodes to get around the house, now due to my own pain levels that is becoming increasing dangerous so there is a bed in the living room and the boys all under 6, don't understand why mummies bed has taken the play space from there toys.

We are trying to fund home adaptations to make lucy able to go upstairs, a level access shower room and a powered wheelchair, these will massively improve Lucy's quality of life, her independence and her ability to get through the days with whilst controlling the onset of the symptoms, but most importantly will make her feel like a mummy and a wife again.

The reason we are asking for your help is that the NHS is helping partially fund the basic wheelchair but not one that is able to be used all day long and handle the rural area that we live in, and we are currently only partially eligible for disability access grant. So now we are left with no ability to fund these necessary changes, as with all families of young children on one wage we are already struggling to manage with the basic normal expenditures from clothes for the ever-growing little ones, to food and the normal bills.

It has taken a lot for us to reach out and ask for this help as we are normally quite a private family, We thank you so very much for taking the time reading this and for any support you have been able to offer.

Wish you all health and happiness from the Twiddy family.