Ebonie was born prematurely at just 36 weeks + 4 days on the 28th March 2013 at Leeds General Infirmary and due to my complicated pregnancy with Ebonie we knew there was going to be a diagnoses at birth for which Ebonie was diagnosed with a rare condition called Mowat-Wilson Syndrome. Along with this Ebonie was also diagnosed with at birth or later on in life with;

1. Hirschsprungs disease (Has an ileostomy)

2. Growth problems (Fed through a gastrojejunostomy button)

3. Congenital heart disease (muscular VSD)

4. Cortical visual impairment

5. Severe developmental delay

6. Absent corpus collosum

7. Bilateral hydronephrosis (Kidneys)

8. Sleep problems

9. Subluxed hips

10. Non-verbal

11. Nil by mouth

12. Non-mobile

13. Epilepsy – (Focal and Tonic Clonic Seizures)

14. Respiratory problems - Recurrent chest infections

Doctors told us that after she was born she would need to remain in hospital on the Newborn intensive care unit, which came as a shock to us as Ebonie was our first child and we struggled to get our heads around everything when other parents were taking their newborn babies home and Ebonie was to remain in hospital on an intensive care unit. Ebonies health was up and down and she was been monitored very closely by so many health professionals which are still involved with her care to this day. However, Ebonies health deteriorated that much that we noticed she was struggling with feeds and was having great difficulty with her breathing. We knew throughout my pregnancy that Ebonie had a hole in the heart (VSD) which we thought might be the reason behind her struggling; however it turned out that Ebonie’s PDA hadn’t closed up after birth like it should of, so Ebonie required surgery for this to be closed.

As the days and weeks passed Ebonie underwent several surgical procedures such as heart surgery, a placement for a colostomy (stoma) was added to Ebonies stomach due to the diagnoses of Hirschsprungs disease as prior to the surgery she was having daily washouts to her lower bowel which unfortunately Ebonie was not tolerating.

When Ebonie was born she was fitted with a nasal gastric tube to help with feeding as Ebonie was not tolerating oral feeds very well. However, when Ebonie underwent surgery on her bowel the surgeon removed Ebonies nasal gastric tube and replaced it with a direct feeding tube to her stomach which helped in times where Ebonie was not tolerating oral feeds. Overtime Ebonie progressed with her oral feeds due to having her PDA closed (heart surgery) and came home on a mixture of oral and pump feeds.

Ebonie battled through her time on the Intensive care unit and came home the day before her daddy’s birthday which was great as this is where it all began for us as parents to a child with special needs.

Since Ebonie’s return home in June 2013 up until this present day Ebonie has undergone further surgery for the reversal of her stoma so that she could have a fully functioning bowel, however surgery did not go the way we had hoped and Ebonie now has an ileostomy which functions perfectly and meets her medical needs. The surgeon felt it was not the right time to reverse her stoma due to poor health and the fact that Ebonie is non-verbal and wouldn’t be able to communicate her incontinence needs. Ebonie did however develop basic developmental skills from the help of Physiotherapy and basic equipment e.g rolling over, using strength of her arms and using both hands together to pass objects or toys as well as using a specialist seating system and a standing frame. Ebonie came home from hospital on a feeding pump, however because we was offering her oral feeds throughout the day she eventually progressed onto full oral feeds and no longer required the pump feeds.

All of the above was excellent progress for Ebonie since leaving hospital however things soon drastically changed for her and her health. Ebonie’s health changed significantly where she began to vomit all her oral feeds (solids and liquids), which led to Ebonie losing large amounts of weight and to become lethargic. Eventually Ebonie was admitted to hospital on numerous occasions for her poor health where various tests and examinations were carried out and long periods of time spent in hospital on a ward.

Ebonies life and health changed since having all these hospital admissions due to ill health and is now on permanent pump feeds, various medications to control reflux, urinary tract infections and a specific medication to help with her sleep difficulties. She is also no longer mobile on the floor anymore and requires constant around the clock care, support and supervision. She has also gained far more health professionals from when she was discharged from hospital in June 2013 and requires regular hospital appointments with various professionals that cover her health needs and syndrome. Ebonie has also now been diagnosed with Subluxed Hips, which it is uncertain as to whether she will require surgery later on in life to correct her hip joints as this will affect Ebonie’s quality of life overtime. This is something which is been monitored by her health professionals and regular reviews are done every 6 months.

Ebonie now has a different feeding device called a gastrojejunostomy which all her feeds go via the jejunostomy port through her feeding pump, whilst her gastrostomy port is now on free drainage due to her stomach not functioning correctly and requires her gastrostomy to be on free drainage 24/7 so that her stomach acids can be drained into a bag, otherwise Ebonie will begin to vomit and become poorly.

All of the above makes Ebonie who she is today and that’s unique. Ebonie will soon be turning 7 years old in 2020 and over the past 6 years Ebonie has spent many months in hospital due to ill health or surgical procedures and plenty of days off school due to sickness but those months and days have been the hardest for us as a family especially when you see your little girl go from been this happy, cheerful, smiley and full of laughter to a sleepy, lethargic, weak, wired up to monitors with drips, oxygen mask and cannulas attached to her when we don’t know Ebonie’s life expectancy .

Nobody could of ever taught us or trained us into how to look after and care for a child with additional needs like Ebonie’s but we stepped up to the mark and we became Ebonie’s full time carers and we still are Ebonie’s carers 6 years later and we wouldn’t change it for the world. This girl has taught me and my partner so many things that we would of never learned if we didn’t have Ebonie as part of our life and family. She is a born fighter, truly inspirational with lots of determination which is why Ebonie needs a new car seat, buggy and specialist adaptations to the home to help improve her quality of life and to give Ebonie the required safety and stability that she requires to meet all of her medical needs for example; postural support and secure positioning as this girl deserves it especially when we was told that she would be a couch potato and wouldn’t meet a lot of her milestones. But with Ebonie’s determination and inspiration she is proving those people wrong and we as a family want to continue with that attitude in helping, supporting and caring for Ebonie to live her life to the full.

UPDATE: Ebonie was admitted to hospital with Gastroenteritis and remained in hospital for over a month while investigations and tests were carried out but most importantly for her to become well again. Ebonie eventually came home and remained at home for a week if that when she took the biggest and most heart breaking turn for the worst where she ended up having her first ever Seizure (Focal).

Ebonie was rushed to Resus as the Paramedics were unable to stop Ebonie from fitting within the Ambulance despite giving her doses of Diazepam. On arrival to resus it was the most heartbreaking situation to be in, to see your little girl having to be intubated and poked and prodded at while still having continuing seizure activity was very upsetting, but we knew she was in the best place receiving the best care and treatment even though all we could do was look on while feeling useless as you just wanted to take away all the pain and suffering. We honestly felt like our girl had gone as the seizures were not becoming under control even when she was transferred up to PICU. However, Ebonie was sooon able to be extubated and stepped down to the neurology ward where she improved and came home with permanent Epileptic medication to control her seizures.

Unfortunately, little Ebonie had another seizure, which this seizure was happening while travelling home in the car. She was having a Tonic Clonic seizure. The Paramedics were phoned and we administered the emergency rescue medication (Midazolam) while we waited for the Paramedics as the seizure was prolonged. Again, Ebonie was rushed to Resus where she received tests and examinations as she had a very high temperature. Ebonie remained in hospital for 2 nights and came home on a course of Antibiotics as her chest x-ray results showed that she had a very serious chest infection as well as the fever. We are due to be seen in the Respiratory clinic for a review and Ebonie’s Epilepsy medication is due for review also after these episodes.

Due to Ebonie’s circumstances, we are still looking to fund the car seat and buggy but now also looking to fund for other items relating to her Epilepsy. The following items are below:

1. A specialist car seat – This will support Ebonie’s postural needs while travelling but will also be comfortable and meet all of her needs and requirements. This is very much important for if Ebonie was to have a seizure while out travelling to protect her from serious injury if the car seat is well padded and cushioned.

2. A specialist buggy (R82 Stingray) – This will provide Ebonie with the appropriate support she needs while out and travelling. This will also allow all of Ebonie’s specialist medical equipment to be transported with her with ease and in reach. This is very much important for if Ebonie was to have a seizure while out travelling to protect her from serious injury if the buggy is well padded and cushioned.

3. Epilepsy Sleep monitor – This will help and support Ebonie and the family to monitor and keep an eye on Ebonie for Seizure activity during the night as at this current moment we don’t have anything and are losing sleep over the pure worry of her having a seizure without us knowing.

4. Epilepsy Alarm, Bed Sensor and Anti-suffocation pillows – This will all help to monitor the seizure activity especially during the night as lack of sleep or poor sleep which Ebonie suffers with can trigger seizures and it would be nice for Ebonie to sleep safe and for us to be able to monitor her with these items.

As we don’t have the funds to be able to purchase all of the above items and the specialist adaptations that are required to the home to make it a safe place for Ebonie as well as making sure all her medical needs are met we are reaching out for your help and support guys because unfortunately all of these items are not something the NHS service can provide and support us with and we have already tried applying to several charities for their help with funding but their funds are very limited as you can appreciate.

We are wanting to help Ebonie by crowdfunding as Ebonie is such a wonderful, amazing, happy, smiley, cheeky, determining, inspirational girl that we want her to be able to live life to the full and have access to activities and day trips with the help of the new car seat and buggy and to also have access to adaptations which will enable us to meet Ebonies requirements and health needs without the need to worry.

These incredible pieces of equipment which can save lives and also fulfill someone’s life and make a huge difference of course comes at an incredible price. But as we know people seem to LOVE Ebonie, whether they are her family, friends at school, teachers, and teaching assistants, health professionals, friends of mine and my partners or even strangers on the streets! She has a lot of support & love around her so we are hoping that we can raise a good chunk of the money!

So please help us, any amount however big or small will be a huge help – every little helps xxx

Thank you in advance!