Help Jasmine Get the Life-Changing Mollii Suit and a trike

Help Jasmine Get the Life-Changing Mollii Suit!

Hello! My name is Jasmine, and I’m an 12-year-old girl with a big heart and a lot of dreams. I love reading, drawing, and spending time with my family. Like most kids my age, I have a favourite movie “Frozen” and I adore singing along to all the songs. But my life is a bit different from most kids. I was born with a rare and serious medical condition called Methylmalonic Acidemia (MMA), which has affected my muscles and brain, making everyday tasks a challenge. I use a wheelchair to get around, and while I’ve achieved a lot, there’s still so much more I want to do.

A Rocky Start

My journey hasn’t been an easy one. I was born with MMA, but my family and I didn’t know it right away. The first few months of my life were filled with uncertainty. I wasn’t gaining weight like I should have been, and I had severe reflux, which made it difficult for me to keep any food down. My parents were really worried and took me to the hospital to find out what was wrong. After numerous tests, including an MRI, the doctors at our local hospital suspected something serious and referred us to Great Ormond Street Hospital (GOSH).

It was there, at GOSH, that we finally got some answers, but they weren’t the kind any parent wants to hear. The doctors told my mum and dad that they believed I had a rare genetic disorder called Methylmalonic Acidemia. This condition affects how my body processes certain proteins and fats, leading to a build-up of harmful substances in my blood. Unfortunately, this had already started to damage my brain and muscles. The MRI showed that I had brain damage on the left side, which meant I might face challenges with movement and speech as I grew up. The doctors reassured us that because I was so young, my brain might be able to form new connections, but it would be a long and uncertain road ahead.

The First Year

My first year of life was incredibly tough. We spent about three months in the hospital as the doctors ran more tests and tried to stabilize my condition. During this time, my parents learned everything they could about MMA and how to care for me. It was a steep learning curve, and it was made even harder because I’m the youngest of four children, so my parents were balancing caring for me with looking after my older siblings.

When I finally got to go home, things started to improve. I had regular check-ups, and by the time I reached my first birthday in October 2013, I was beginning to make some progress. I started to say my first words “Mum” and “Dad” and even began crawling. My family and I had a wonderful Christmas that year, and by the New Year, I was pulling myself up and walking around the sofa. For a little while, it felt like things were going to be okay.

But then, in January 2014, everything changed. I became very unwell, very quickly. My condition can cause sudden and severe episodes of illness, and this was one of those times. My parents had to call an ambulance, and I was rushed to the hospital. The doctors had to put me into an induced coma to help my body recover, and I was transferred back to GOSH.

Those three days in the coma were some of the most frightening times for my family. No one knew how long I would need to stay in that state or if I would wake up the same as before. When the doctors finally woke me, I was disoriented and scared. I remember trying to get away from all the wires and equipment attached to me. But things were different, I couldn’t talk or move like I used to. The doctors thought it might be the shock of the experience that caused this, but my family knew we were facing another tough challenge.

We stayed in the hospital for another two months, during which time the doctors ran more tests to figure out what had caused me to become so unwell so quickly. They discovered that the brain damage had worsened, and it was unclear whether I would regain the ability to walk or talk. It was a heart-wrenching time for my family, and we had to adjust our expectations for what my future might hold.

Growing Up With MMA

As I’ve grown older, my condition has remained unpredictable. I’ve had many trips to the hospital, often ending up in A and E or even the Paediatric Intensive Care Unit (PICU). On three occasions, I had to be put into a coma to stabilize my condition. My daily life involves taking a lot of medications, including daily injections, and I have a PEG tube to help with my nutrition because I can’t eat a typical diet due to the need to limit my protein intake.

I use a wheelchair because my muscles don’t always cooperate, and I’ve had to work really hard with physiotherapy to maintain as much movement as possible. Despite these challenges, I’m determined to live my life to the fullest. I’ve learned to talk again, and my love for singing has only grown. I can still remember the first time I sang “Let It Go” from “Frozen” at nursery—it made my mum cry because she was so happy to hear my voice again.

I go to a special school where I get a lot of support, and I use an iPad to help me communicate, especially on days when talking is too difficult. My family and I work together to make my life as normal and joyful as possible. We play games, sing songs, and I love participating in activities like “Just Dance.” I’m a very smart girl, and I love learning, even though my condition sometimes makes things harder.

Why We Need Your Help

Even though I’ve come a long way, there’s something out there that could help me even more, a Mollii Suit by Remotion. This special suit is designed to reduce muscle stiffness and spasticity, which would make it easier for me to move around and live more independently. The suit uses low-frequency electrical stimulation to help my muscles relax, which could significantly improve my quality of life.

Unfortunately, the Mollii Suit isn’t available on the NHS, and it’s very expensive. My family and I are doing everything we can, but we need your help to make this happen. That’s why we’re reaching out to our community and beyond to ask for your support. Every donation, no matter how small, will bring us closer to our goal and give me the chance to live with less pain and more freedom.

Your generosity could make all the difference in my life. With the Mollii Suit, I could have the opportunity to move more freely, experience less pain, and enjoy the activities I love even more. Please consider donating and sharing my story with others. Together, we can make this dream a reality and help me live the best life possible.

Thank you so much for your kindness, support, and for being a part of my journey, and for taking the time to visit my JustGiving page.

I added some pictures of my life journey.

When I was born in March 2012.
This is when my Mum took me to hospital when she was very concerned about me.
There are pictures of my first 6 to 12 months.

This is when I got very ill and went to the Paediatric Intensive Care Unit (PICU). It was a very scary time for my parents.
When I woke up, and a few days after it all with my Daddy.
This is my first year after it all happened, and my family tries to keep me involved in everyday life with them, going to the park on days out were lots of fun.

I got my first chair to make it easier for my parents to take me out and about.

My first chair at home and nursery it is called an R82 chair it can move up and down so my parents can feed me better and play too.

I got back to walking with this walking frame. I was doing so well.

This is when my Mum got some information about a special suit called a Mollii Suit back in 2020 and we went to try it. It was good but we found out it was not on the NHS and it is very expensive. So I wanted to try some other things first and we were also moving home.

I have tried some medication that did not help me it made me ill so my parents stopped it. So this year 2024 my parents went back to see Remotion teams that do the Mollii suit to get reastess. This went so well my mum was crying to see me so relax and able to be me, that I told my Mum and Dad I need this please.
I could sit in my wheelchair without all the support on me and having to hold my arm down, it was so nice.

My goal it to reist the money for a Mollii Suit to help me control my body better and to get a trike to help build my muscles up and to ride bike with my Daddy too.
I need to be reassessed for a Quest88 Carousel trike but this was the one I tried in 2021 and I love it.

If we reach over my goal I will add it to other special equipment that I need to make my life more easily for me at home. Eg: make my bedroom easy for me to accessible to me.

“If we raise insufficient funds, or surplus funds, then the funds will be used, if appropriate, to fund support for our child’s needs in accordance with Tree of Hope’s charitable objects. If in those circumstances we are unable to use all or part of the funds for the benefit of our child in accordance with Tree of Hope’s charitable objects, then any funds that cannot be used will be transferred to be used for the general charitable purposes of Tree of Hope.

If you have any questions at all please do not hesitate to call the family support team on 01892 535525.”