I have to admit, that I’m not really sure how to start this post, because I’m not very good at asking for help. I’m fiercely independent and would rather struggle myself than have someone else do something for me, even if doing so results in injury. But, this isn’t about me now. It’s about a little baby who’s quality of life won’t be what it could or should be if I don’t ask for help. I need to start fundraising for a SmartDrive.
As you probably know if you’ve read my blog before, I came off all my medication to try for a baby. While doing this, my hypermobile Ehlers-Danlos syndrome (hEDS) went down hill and I needed to start using a wheelchair. This was part time at first, but pregnancy has caused my postural orthostatic tachycardia syndrome (PoTS) to flare up massively, to the point where I’m unable to stand up safely. It has also caused my joints to become even more lax. As a result, I’m in a lot more pain and experiencing more subluxations. These result in damage, which my body isn’t fully able to repair. I’m also experiencing significant fatigue, brain fog, memory issues, dizziness and breathlessness because of my hEDS and PoTS.
Because of the way pregnancy has affected my hEDS and PoTS, I’m not able to push my wheelchair on anything other than a completely flat surface for a short amount of time. Trying to self-propel my wheelchair outside causes subluxations, dizziness, breathlessness and increases my pain very quickly. As a result, I’m not able to get out of the house without help.
Our baby girl at her 20 week scan
Post-pregnancy, I will be able to start taking medication again. This will allow me to function enough to be able to take care of baby safely, something my body wouldn’t be able to manage in it’s current state. But, we’ve already been told at our rheumatology pre-pregnancy counselling appointment, that I will need intensive treatment over a long period of time post-pregnancy and that it may not be possible for my body to ever get back to it’s pre-pregnancy state.
Since becoming pregnant, not only have my hEDS and PoTS gone downhill, I’ve also developed Symphysis Pubis Dysfunction. I’m working with an obstetric physio to minimise the impact this has on me long term. But, we don’t know how things will progress and we don’t know what the act of giving birth will do to my body.
Prior to me becoming pregnant, I was only able to walk a maximum of 10 meters with crutches. I also couldn’t go out more than once a week because of the extreme pain self-propelling my wheelchair caused. As I will need to continue to use my wheelchair post-pregnancy for a number of years, potentially forever, I need to ask for help in fundraising for a SmartDrive.
I want to be the best Mum I can be, and give our daughter a great life. But I can’t do this if I can’t leave the house without help. Even if medication improves my situation, a short trip out once a week isn’t fair on a baby or young child and isn’t practical for a new Mum.
I’ve put up with not being able to leave the house without assistance for a while, because it’s largely only impacted on my quality of life. But I need to ask for help in fundraising for a SmartDrive, so that my limited mobility doesn’t impact on our daughter’s quality of life too. Unfortunately, power assist devices aren’t available through the NHS.
If you’ve read my Buying Vs Leasing A WAV post, you’ll know why a power chair isn’t a suitable option for me. In summary, because I’m not allowed to drive I need a wheelchair that will go into a car. Ideally the cars of all the main family members I travel with regularly – our family car, my parents’ car, my in-laws car and my sister’s car. The Motability scheme is something that I’m not currently eligible for and wouldn’t be an option for me, even if I were. More on this in the WAV post.
While my mobility scooter, a gift from my Dad, has been a great tool for me in the past, allowing me to go out once a week, it does cause significant back and hip pain. Despite it being very small, it’s still too big to fit into many spaces in our area – my doctor’s surgery!
Update: After a year and a half of problems with the mobility scooter, including having it receiving three new transaxles, it’s being returned and refunded. Dad has very kindly said he’s going to put this money into the SmartDrive fund. So once he’s received this I’ll be updating the GoFundMe page with an offline donation from my parents for this amount.
Dan and I have taken a long time researching the best powered options to give me the most independence and allow me to be the best Mum I can be. We’ve spent time trying all of the power assist options available, including the recently released Twion T24 – an updated version of the M24 which has a cruise control function. Getting hold of the Twion T24 to test drive has been difficult, but was totally worth it to know that the SmartDrive is 100% the best option for me and my family.
A SmartDrive is a device that attaches to the back of a wheelchair. It’s activated by wearing a watch-like device and tapping your wrist to engage the motor. That moves the wheelchair without the need for any pushes on the wheelchair’s hand rims. The only think I’ll need to do is steer! You can see the SmartDrive in action below.
Other options we have considered, tested and have had to rule out include:
A power chair: which wouldn’t go in our car.
A power chair with a wheelchair accessible vehicle or multi-purpose vehicle: A WAV/MPV is more expensive to buy than a SmartDrive and would involve additional costs (tax, MOT, etc.). I’d also only be able to travel in that one vehicle. As a non-driver, this would be an issue for me and would make staying with my family in Essex very difficult.
A folding power chair: find out why this isn’t suitable for me in my Pride I-Go Portable Powerchair Review.
A hand cycle attachment: which lifted my wheelchair’s caster wheels too far off the ground, putting my back and neck at a bad angle and causing intense pain within minutes.
You can find out more about the options we’ve investigated in my Powered Mobility Options blog post.
Carrying a baby safely as a wheelchair user can be tricky, but having a SmartDrive will make it possible for me to wear our baby in a carrier, as my shoulders won’t be constantly moving to push my wheelchair.
However, this life changing piece of equipment is £4,795 a price that we just can’t afford (this is the price being quoted by all of the UK stockists). So I’d like to ask for your help with fundraising for a SmartDrive, to allow me to be the best Mum I can be. You may have seen from previous posts that any earnings from my blog will be going towards funding power assist and this is still the case. GoFundMe take an 8.5% cut of any money raised through their site, plus 20p for each donation. So the money I’ve earned from my blog will be going towards paying this, so that all donations go directly to buying the SmartDrive.
I’ve been very lucky that my wheelchair has been funded by my local wheelchair services. However, they have very strict rules about any adaptations made to their wheelchairs, including adding power assist. They have stipulated that any device I have added to my wheelchair must be purchased from a seller they deem reputable and must be new.
If I were to add a second hand device to my chair, they would no longer service my wheelchair and reserve the right to refuse me a new wheelchair when my wheelchair review is due in just under 4 years time. As I’ve had ongoing problems with my wheelchair, I can’t risk adding a second hand device to my wheelchair and potentially being left having to spend £2,000+ if this one breaks again. You can find out more about the problems I’ve had with my wheelchair in my It’s Back To The Factory For My Wheelchair post. These problems are still ongoing and I’m working with wheelchair service to get them sorted.
A SmartDrive will give me so much independence and allow me to be the Mum I really want to be. By supporting me in fundraising for a SmartDrive, you won’t just be changing my life. You’ll be helping me give our daughter the best life possible.
I would greatly appreciate any help you can give me in fundraising for a SmartDrive. I know not everyone is able to donate. I’ve been there before wanting to help out friends who need wheelchairs but having no money coming in at all (thanks PIP tribunal – not!). So, if you can’t donate, please consider sharing the GoFundMe page on social media. It takes very little time and can make such a difference to the success of a campaign – you never know who will see your tweet/retweet!
My GoFundMe link is: gofundme.com/tania-and-babys-power-assist-fund and I’ll have this pinned to the top of my Twitter profile. I’ll be replacing the pinned tweet regularly to make it easier for you to share as often as you’d like without having to scroll through my feed to find something you haven’t already retweeted.
Thank you all so much for your love, support and help in fundraising for a SmartDrive and throughout my pregnancy journey.
It truly means the world to Dan and me.
Find me on:
You can also sign up for my newsletter!