Eboni was born on 02/07/2002. She was born with a natural light that was gifted to her by the angels. Eboni had a normal childhood growing up with her two older brothers; she was always such a bonnie, happy little girl. By the time Eboni was 4½, she fell very ill. She was coughing a lot over Christmas 2006 and became very gray in color. She ended up at Great Ormond Street on 4th February 2007 with serious heart failure caused by a heart condition called Hypertrophic Cardiomyopathy. We were told it would take a miracle for Eboni to survive the night. However, she did, but she needed a heart transplant to completely fix her heart condition. She got put on the list for exactly that. Eboni was in the hospital for just over a month and left with a Hickman line in her body. A fairly large muscle biopsy was removed from her thigh. This was a challenge to keep clean, and Eboni had this line for over 9 months. With medication, Eboni started to get a little better and grew stronger, which helped her to have a fairly normal everyday life for some time. We received a call about a heart that became available in June 2007, but after being blue-lighted to GOSH at midnight, unfortunately, the heart died, which meant that Eboni couldn't have the transplant. We were sent home, but Eboni never received another call about a heart. She was placed on various heart medications to sustain a good quality of life.

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Following this year of many medical appointments, Eboni was getting stronger and returned to school with various medicines. She went away with the school with some help and lived a good life as much as she could. She did get very out of breath and had lots of ups and downs. With this heart condition, Eboni had, it meant that she was classified as palliative care. This just meant she would have a limited quality of life. She was able to access EACH and have some respite stayovers during the years to come. In the year 2009, EACH paid for several families to go to EuroDisney for 4 days, and we were one of those families. EACH ensured that all family members could go to make memories. We had a great time, and Eboni loved it. This was one of a few trips EACH and various other charities helped us enjoy as a family, making memories. Another time, the Make-A-Wish foundation granted Eboni’s wish to go shopping in London by limo, and we again, as a family, got to go to London, stay in a hotel, get picked up via a limo, taken to shop with a personal shopper for Eboni, then taken to Harrods where Eboni got to have her hair and makeup done and then have lunch, and finally, taken back to the train station. This was another amazing experience for Eboni to have, and she beamed from ear to ear.

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By 2010, Eboni started to walk a little wider than usual, and her gait became unsteady. I questioned this with GOSH, and they said they would have a look and retest her muscle/tissue they had removed several years ago. In the process, both I and Eboni’s father were tested by a genetic counselor to see if there was any correlation between Eboni’s illness and our genes. These tests continued for a few more years while her walking was deteriorating very rapidly. During these years, Eboni was referred to neurology and endocrinology to help and assist with Eboni's walking and balance while learning and adapting to using a wheelchair. Eboni had her first wheelchair, which was pink and found it hard, people staring all the time.

After a few years of tests, we had to go and discuss the results the hospital had found. On April 16th, 2012, during the appointment, we were shown and told that Eboni had a fairly rare condition which came from a recessive gene that both I and Eboni’s father carried. It's called Friedreich's Ataxia, which is a neurological degenerative disease causing balance and coordination problems. It creates a snowball effect of illnesses within the one illness. We were in total shock as to what this meant for Eboni and us as a family. What changes were to come? How would we/Eboni cope? Would she ever walk, go blind, be completely disabled, become cognitively impaired? It did mean that Eboni would become fully wheelchair-bound, have severe scoliosis, and be in constant pain, among other things.

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After this appointment, Eboni was coming up to 11 years old, starting high school. Wow, what a transition this was. Tough, restricting, and full of rules described Eboni's experience. Her walking was getting worse, and various other illnesses were creeping into her life. By the end of the year, Eboni used a wheelchair a lot more, and her scoliosis was slowly deteriorating. School was tough; it took a lot for Eboni to mix as she felt very different from everybody else. Eboni got to go to PGL in high school and had wonderful support, enjoying zip lines and fantastic adventures. However, by the end of year 9, when Eboni was nearly 14, school was really getting to her. She was made to feel like a burden as her needs had greatly increased, and she needed a lot more support with personal care and moving from point A to point B. However, this was not always possible within the school she was in. Eboni became very depressed and wanted to end her life. She was placed into an emergency crisis team for her mental health. This team included a psychiatrist and a psychologist who worked tirelessly to support Eboni through this very dark and troubling time. Now Eboni was placed on antidepressants to help her see some sort of light through the darkness. Following this, we decided that homeschooling would be the best thing for Eboni, and she left the high school she was at.

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Eboni spent a year at home, feeling dark and lost. She worked hard to come back from the dark place and, after a full year of homeschooling, started at a new school in 2016. She repeated year 10 as she lost a year. But Eboni was fine with this; going straight into year 11 and missing all the GCSE buildup would have really impacted her education. Eboni was still feeling the effects of depression and struggled with her wheelchair, illness, and constant back pain. In general, Eboni's life was difficult, but she managed to keep going. There needed to be an outlet for Eboni, so we decided to fundraise for her very own bespoke high-tech power chair. Within a month of starting at her new school, we had arranged a funday to raise money and a disco the following day. We raised £3500 in 2 days, and then lots more help came into play over the next 6 months. We raised what was needed for the high-tech chair within 6 months. In the last month of March 2018, Eboni created her very own play and sold tickets to raise the last £1000 needed before we could order her chair. We were all on stage acting and singing for Eboni's own written script. It was truly amazing to see Eboni coming out and being in the light again. She achieved such a momentous moment, and we were and always will be so very proud of her.

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Following this, we ordered her new chair and a Motability van to transport it and allow Eboni to live a full life. The chair arrived in August 2017, as did the van. Eboni's world opened up even more. She went to see Little Mix in concert at least twice. Another wish from the Rays of Sunshine foundation gave Eboni the opportunity to meet Little Mix and have her picture taken with them. Then she ate lobster, and we stayed in a lovely hotel. During this year, Eboni also went paintballing with the school and had a fantastic time. The school fully supported her, and what made life a little easier was that the school was all on one level. However, during the time of GCSEs, Eboni fell very ill with her heart not working as it should and deteriorating. The stress she was under caused her to suffer from seizures, which left a blank spot in her memory. She was diagnosed with non-epileptic seizures, and any stress would result in her blacking out and shaking uncontrollably. Several times during her 2 years at the new school, Eboni was taken by ambulance due to these seizures, causing her to miss school and lose valuable learning time. Because of these challenges and stress, Eboni had to drop some subjects and only do the bare minimum. Eboni left with 5 GCSEs instead of the 11 she aimed for, as she just couldn't manage the stress. Eboni had her prom and felt the best she had felt in a while. She looked truly amazing and quite the young woman. Eboni had earned every moment of her prom, and she was so popular with her fellow pupils and teachers that they were all sorry to see her leave.

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During the summer, we went to Keswick Park for physically disabled children in the Lakes, where Eboni had an absolutely brilliant week away with climbing, abseiling in her wheelchair, canoeing, cart riding with horses, swimming, archery, and much more. Eboni also experienced gliding this year and felt as free as a bird.

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Eboni started college in 2019 but had to do three years to prove she could manage the workload for A-levels. She wasn't happy about this but knew it was the only way she could study the subjects she wanted. She ended up top of her class for sociology and English and absolutely loved learning; she absorbed new information like a sponge. The first year was challenging, but it gave Eboni a great foundation to understand what was expected of her. The second year, Eboni did very well and achieved great grades. We started discussing her going to university the following year and what she wanted to do. She said she would love to go to Anglia Ruskin University and become a mental health nurse, working in prisons to help rehabilitate prisoners or assist people with mental health challenges in some way. Unfortunately, in the last year Eboni was at college, she became very ill from the COVID vaccine and ended up in the hospital more than she was at college. Eboni had developed atrial fibrillation (AF) in her heart, which was already seriously ill and couldn't maintain a normal rhythm. These episodes lasted several months on and off and eventually led to Eboni needing emergency transport to London St. Bart's Hospital for a pacemaker to be implanted. However, the operation did not go as planned, and Eboni ended up in ICU for 4 days. After Eboni woke up, she was taken back to the ward, truly exhausted and depleted of all energy and life. She kept being sick and experienced so much pain; she just wasn't well at all. Her bowels had flared up, her liver was damaged from crashing in the theater, her kidneys were not functioning properly, and she developed blood clots in her neck and arm. The pacemaker wasn't even switched on yet; during surgery, it kicked her back into AF. She had already undergone 3 cardioversions to reset her heart, but they didn't work.

We got Eboni home after 4 weeks in the hospital in November 2021. However, upon returning home, Eboni was very ill. She was losing weight, being sick, and experiencing pains; she was not well at all. We returned to our local hospital, and Eboni was now retaining fluid and taking warfarin for the clots and water pills for heart failure. Her condition wasn't looking promising. Eboni came home knowing that this Christmas would be her last. Eboni went to Tapping House Hospice in January but was only there for 10 days. Then, she returned home where all her family was. We were all with Eboni every day, holding her hand, laughing as much as possible, reading to her, and loving her for just being. Until the very sad day when Eboni passed away on 1st February 2022.

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Eboni's life journey was a roller coaster of ups and downs, a fight, inspiration, determination, darkness, light, happiness, joy, love, kindness, and compassion. But above all, Eboni's life was lived to the fullest. She did some truly amazing things, had many holidays, and created numerous memories that we will forever treasure as a family and keep close to our hearts. Eboni's wish before she passed away was to help other families like ours have remarkable times, make memories, and live life. YOLO was the quote she lived by: dream big, go get it, live it, and be happy. Eboni was truly a happy, bright, special, beautiful daughter, sister, granddaughter, and many other things to many other people. Eboni brought such a light and beacon of hope to many people's lives and will continue to provide that light through the work of the Ebi Foundation charity.

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Thank you all so much for supporting our charity, now Eboni's legacy. xx

This is for you, our beautiful Eboni. xx Thank you for being ours and for being you. xx