**Fundraising is now finished! I have my wheelchair. See latest update for info**
Hey there! I'm Tamsin, I'm 30 years old and Mum to a gorgeous 5 year old who is the light of my life. I really need some support funding a wheelchair to help give me my life back.
About My Conditions:
I suffer from a very, very rare condition called Heterotaxy Syndrome with Polysplenia - (the Polysplenia is multiple spleens which sadly don't function well and means my immune system is poorly functioning). This has caused issues with practically all of my organs. I also have a slew of other onditions that were caused by my Heterotaxy Syndrome. You can read up on Heterotaxy Syndrome through Google as it's quite a lot for me to explain here.
This is something that I was born with and has caused multiple complex defects with almost all of my organs. Which, in turn has then caused several other chronic conditions that sadly cause me a wide range of symptoms that often make leaving my house extremely difficult.
I suffer with very severe pain in my back (which radiates down my right arm when it gets bad), chest, upper abdomen and under my ribcage which is linked to the multiple conditions caused by my Heterotaxy Syndrome - this means that standing straight to walk is often extremely painful and so you can imagine that also trying to walk when in pain from these issues causes me further pain, along with finding it difficult to mobilise too. I was also diagnosed when I was a child as having hypermobile joints in my knees and hands - with the issues in my knees causing a significant amount of pain when walking for just a few minutes - this is actually worsening with age.
Not only that, but due to the malnutrition from my Gastroparesis (of which I am tube fed via an NJ tube), I've suffered from muscle atrophy which means that my muscles have wasted away. So walking and any kind of movement is extremely difficult and exhausting. Coupled with severe fatigue and muscle atrophy from my lack of nutrition, pain from my hypermobile knees and problems with a currently undiagnosed issue surrounding my heart racing randomly and awful dizziness that causes my vision to black out and legs to give way (even on occassion, fainting), I simply cannot walk far.
Along with that, I often use GTN spray for one of my conditions which lowers my already low blood pressure even further, making my vertigo and dizziness worse and puts me at risk of hurting myself due to a fall from fainting.
Over the past few months my health has deteriorated quite badly and really highlighted how bad my mobility issues have become.
I miss out on a LOT of time outside the house with my 5yo son and partner which really breaks my heart. It's soul destroying only being able to 'watch' from the sidelines and always sitting home alone whilst they go out. I often go months without ever leaving my house, only leaving to attend my many hospitals appointments.
A wheelchair would allow me to leave the house to do normal life stuff that I crave to be able to do. It would give me my independence back and allow me to function, despite my severe pain. And it would also mean that I can get out with my 5yo son and partner - we can go for walks (or adventures as my son calls them), go to the park, have days out together (which I miss SO much). I can be the Mum I desperately want to be. A wheelchair would give me my life back.
I would really truly appreciate any help (even if it's just sharing) in raising funds to help me get my freedom back.
The Wheelchair I Want To Buy:
The wheelchair I want to buy is either the Invacare Kushall Champion or the K Series which is over £2,000 for the base model (or an equivalent in TiLite or Quickie), before extras that I need (full assessment will be made at fitting to determine which chair suits best). It'll fit in our car and allow me to self propel easily due to lightness and rigid frame, or be pushed when I'm struggling. Adaptations can easily be made to the chair to comfortably alloe my partner to pushme such as height adjustable handles. Not to mention extras to accommodate feeding tube equipment so that I don't have to cause further pain to my back by wearing a backpack to carry a feeding tube pump and bag containing formula feeds and my many medications (especially emergency medications like my EpiPens).
The target amount I'm raising is actually less than I need and will get - this is because I need to add extras to the chair to accommodate my needs, and Go Fund Me also takes a percentage of funds. So I will actually be personally funding the difference I need after Go Fund Me take their fees. I hope that makes sense!
Any help, even just sharing this page is so very much appreciated and means the world to me.
Thank you xox
- Louise Beynon
- Sara Munton
- Naomi Murphy
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