Scarlett’s Accessible Home Fund

Hello everyone. Thank you for taking the time to come on here and read our story.

I am Heather, the mother of Scarlett who is 7 years old. We are a young family of 5 with myself, Dad, Mason and two younger siblings, Maisie, 5 and Pheobe, 2.

We are raising money to make our home accessible for Scarlett.

Scarlett has numerous health problems, some of which are severe and limiting her life and what she can do.

So let’s start from the beginning.. what is wrong with Scarlett? Why have we made this go fund me?

When I was pregnant with Scarlett in 2016 I found out she had a condition called Gastrochisis and a hole in her heart which luckily closed up on its own by the time she was 18 months. Gastrochisis is where the abdominal wall hadn’t closed in the early stages of pregnancy, this resulted in Scarlett’s bowel being on the outside of her body, Scarlett was brought at 36 weeks via induction, minutes after birth she was rushed to neonatal. Luckily at 2 hours old Scarlett had a full closure surgery and the bowel was back in, but unfortunately because of what happened with birth Scarlett is medicated to make her go to the toilet, she has now been diagnosed with Bowel and Bladder Incontinance and we are awaiting a for a permanent catheter to be fitted. But by suprise at birth she had numerous other conditions that wasn’t detected in pregnancy, with the main one being a condition called Arthrogryposis - Amyoplasia (AMC) this affects her in her upper limbs. Her wrists are curled in and her arms are in a fixed straight position. We are currently under an amazing team of plastics, surgeons, doctors, occupational therapists ect based up in Leeds where we have to travel every 6 weeks to see Scarlett’s specialist team of people. Scarlett has had 4 transplants to try and regain muscle and flexibility in her arms and wrists. 2 muscle transplants and two nerve transplants. Unfortunately 2 of them surgeries was not successful and over the next 12-18 months she will be going under another two operations again to have her wrists pinned back and another 2 transplants of nerves may be taking place.

Now the most devastating of all. Scarlett is currently registered severely sight impaired. Scarlett is going blind, and will be blind eventually. She has an inherited condition called retinal dystrophy, in simple terms this is where your eyes can’t process light correctly. Scarlett has lost nearly all of her colour vision, she can’t see in low lighting and darkness also. The reality of this she could wake up tomorrow blind. Just a few weeks ago, she went sleep ‘fine’ woke up the following morning and her right eye now has black spot in her vision filed. From what her team of eye doctors at the hospital have said it’s progressing quicker now than it ever has. We go for appointments there every 4-6 weeks and each time the progression is greater and greater. There is already little to no vision in her right eye. We are currently learning read and understand braille, and learning to use a White Cane (sight cane). Recently we had to get our middle child Maisie tested for the same condition, after a lot of anxiety it came back that she didn’t have it, which was a relief. The fear that my child will never see my face again, the world, everything is breaking us as a family so we are trying are hardest to make the best memories for her to always remember before it’s too late, unfortunately time isn’t on our side.

Scarlett is also under CAMHs (Paediatric Psychology) and has been for 3 years due to her fear of hospitals, it has been a lot for her, the needles, strange people, the medication. We could be going to what we would say is just a ‘simple’ GP appointment, Scarlett will go into meltdown as she thinks something she doesn’t like is going to be happening. She has recently been diagnosed with ASD and Dyslexia.

Why are we doing this?

In 2017 me and Scarlett had to flee from Domestic Violence. We moved away from our support system, friends, family, everything, to a lovely 2 bedroom flat in a lovely little village. Unfortunately as Scarlett grew and as our family did too, we wasn’t able to adapt the home to Scarlett’s needs and there wasn’t space for us all. After a long 5 year battle last August we finally moved into a beautiful 3 bedroom home that is able to adapted to her needs. But the place needs a-lot of work doing which we our slowly doing ourselves. I am very lucky that Mason is a qualified Plumber and Carpenter and he works in the trade so he has contacts.

Unfortunately like I said above time isn’t on her side and with long waiting lists, we need our home adapting for Scarlett as soon as possible.

After a recent home assessment and then being referred to the right services and having them involved (social care, OT) we are looking at a 1-2 year wait just for a full assessment for a wet room to be put in for Scarlett but then we have to wait for the assessment to be accepted, which again, is another year long wait, if it isn’t will make this process even longer. Then it’s the wait for the fitting. Possibly in the end we will have to pay adaptions to be done in the end anyway. We are looking at a 3-4 year time scale.

Promoting independence for Scarlett has always been a massive thing in our family for her, and of course she speaks her mind! Having a wet room for Scarlett is essential, as she is now 7 years old, she is wanting her privacy, which is completely understandable. But due to us having a bath, Scarlett cannot climb in and out due to her condition and the dangers, if she slips and falls on her arm, the potential is she will break it, and she will loose it, and with her vision being poor, this is not a good mix. So we currently lift her in and out of the bath and have to stay next to her for to support, and wash her as there’s not much room in the bath space we have. We are unable to have a chair, nor a removable bench seat in our bath as it’s small and narrow. Toileting, there’s not enough space for a temporary frame, nor to have bars fitted on the wall, we have to help Scarlett move on and off the toilet, clean her, and pull her pants and bottoms back up. Scarlett has regular toilet trips at least one every 30-40 minutes so you can imagine this is a lot for her and us to do. If we was able to move the toilet she would then have the space to at least take herself on and off toilet and to do it safely as permanent bars would be fitted, which is essential as it’s what she will remember when her vision goes.

We want to make a functional but adapted family shower/toilet/bathroom, the plan is to get a shower tray fit flush into the floor(most littlest step possible into the shower) with a seat and bars fitted. To also move the toilet into a more beneficial place for Scarlett so it can meet her needs. Like I said time isn’t on our side regarding her sight, we need her to remember as much as possible about her main surroundings whilst she still has vision, as it will be a lot harder for her to adapt when the vision goes and there is a very large change to the bathroom.

Myself and Mason work, I work part time in our local shop, I work part time so I’m able to take Scarlett to her 2-3 appointments a week, and then to also be there for my other two children too, but Mason works full time, on call, nights, days, weekends, the lot. We are a working family but sometimes we need to reach out for help as this simply isn’t an affordable way for us to fund this ourselves.

We would like to thank each and every one of you for the support, even clicking the share button and sharing this out this on this means so much.

We have a TikTok, YouTube and Instagram following our journey which has all being going since about 2020.

TikTok: @scarlettsamcjourneyy

Instagram: @scarlettsamcjourney

YouTube: Scarlett’s AMC Journey

Thank you from the bottom of our hearts.

Heather, Mason, Scarlett, Maisie and Pheobe x