'Wheel' you help Hannah?

I am in need of a custom wheelchair and power assist to enable me to become more independent and enable me to go to university next year.

Hi, I’m Hannah.

Thank you for visiting my Just Giving Page :)

Long story short, I’m a 17 year old Christian teenager from Sussex living with multiple chronic health problems/disabilities, and am in need of a custom wheelchair. I love animals, sewing and spending time out in the sun.

I have Ehlers Danlos Syndrome (EDS), Complex gut dysmotility and Postural Tachycardia Syndrome. Ehlers Danlos Syndrome is a genetic condition that affects your connective tissue. Connective tissue is found all throughout the body, therefore can have a huge impact on the entire body and the symptoms can vary for each person.

For me, it has caused severe gastroenterology problems, tachycardia issues and joint instability. EDS causes joint hypermobility which can lead to full or partial dislocations and a lot of pain! There are currently no specific treatments for EDS and the only way of managing it is by addressing each person’s symptoms. Personally, my hips, ankles, knees and fingers are most affected.

For about 4 years I have had Postural tachycardia syndrome which is an abnormal increase in your heart rate after sitting or standing up. This can cause me to experience a very high heart rate, dizziness and feeling very faint!

In 2022 I began experiencing severe pain and nausea when eating. This progressively got worse over time and I had to be admitted into hospital to be fitted with a feeding tube as I was underweight and malnourished. The past year has been incredibly difficult and I have faced a total of more than 8 months in hospital. This has been due to complex Gut Dysmotility. In simple terms, this basically means that food takes forever to be digested! With this condition food can still remain in my stomach 12-18 hours after eating it! This causes me to have a lot of pain, nausea, bloating, makes me feel very full after only eating a small amount, and also causes me to be sick. As a result, I have to have a feeding tube (NJ) that goes up your nose, down your throat, through the stomach and directly into the small intestine (jejunum). Pretty much all of my nutrition, and medication is given via this tube. They are about 150cm long and have to be placed via endoscopy every time. However this has not come without problems, and I have so far had to have 25 NJ tubes placed in only 9 months (Yes, 25+ endoscopies). This is one of the main reasons I have had to spend more than 8 months in hospital.

The main thing that has got me through this past year is my faith, family and incredible church. For the many people praying for me and with me, sending cards and messages, and encouraging bible verses. As I have spent so long in Hospital, I have barely been able to make it to church or attend social or Christian young peoples events.

Recently a very kind friend allowed me to borrow her custom wheelchair with power assist wheels, so that I could attend bible by the beach, a Christian conference in Sussex. This weekend was incredible but would not have been possible without this equipment.

As a result of spending more than 8 months in hospital, I have had to withdraw from my A levels and miss out on lots. I struggle with severe fatigue and regularly don’t wake up before 4pm. Even then I am still tired. ;) But the main struggle throughout this time has been my loss of independence. As a 17 year old I should be spending time with friends and family, going to college, learning to drive. However, unfortunately due to my health my life has sort of been put on pause. Due to my symptoms, I struggle to stand or walk around for very long. Even after a few minutes I will feel exhausted and in pain.

As a result for over a year I have had to use a basic wheelchair if I’m going out anywhere that involves walking, or standing around. This chair is very big and heavy and I cannot self-propel for very long.

I recently had a demonstration day where I tested out some wheelchairs and power attachments to assess what works best for me! The selected wheelchair will allow me to be comfortable, as well as it being very lightweight and simple to use independently. I would really love to learn to drive, but without a suitable wheelchair that I can get in and out of a car independently, this is impossible. I tested out a power attachment called a smart drive. This is an electric wheel, that goes on the back of your wheelchair, meaning that you do not have to push yourself. This would mean I could go out on my own without becoming exhausted from pushing myself around. I would really love to study nursing at University, but without this equipment it would be near impossible. This equipment would mean I am able to save my energy for studying and work placement. The final item is a track wheel attachment. This goes on the front of your chair and lifts the front wheels up meaning you can go off road. This would be amazing for family days out, and would mean we could catch up on much needed time together.

Without a proper custom wheel chair, and power attachment, I would struggle to go anywhere independently. Unfortunately NHS criteria is very specific, and the wait time is very long. This is why we have had to resort to gaining funding. This also means I am unable to attend church events as often as I want to. However, this equipment is incredibly expensive. I am applying to a large range of charities who provide funding for these situations, however this can be very difficult to receive and I may not be successful.

The costs are:

For the Wheelchair - £4464. For the Power attachment (SmartDrive) - £4692. For an offroad wheel - £379

That means I have an overall goal of around £9600 (10,000 to account for transaction fees)

If you would like to donate, it would mean the world to me, and would be helping to gain back my freedom and independence. Donations both big and small would be gratefully received. I would love if you would be able to share this to hopefully help me reach my goal.

Thank you so much for reading this and for your support.

Hannah