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£392raised of £10,000 target by 23 supporters

Weʼre raising £10,000 to help Ebonie live the life she deserves

Leeds, United Kingdom

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Story

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

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 5 years old and over the past 5 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 Ebonies 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 Ebonies but we stepped up to the mark and we became Ebonies full time carers and we still are Ebonies carers nearly 5 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 Ebonies 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.

As we don’t have the funds for the car seat, buggy and the specialist adaptations to the home and also because all of these items are not something the NHS service can provide and support us with we want 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.

All donations will go directly to Ebonie for the use of purchasing a new specialist car seat, buggy and specialist adaptations to the home from the specialist companies that have assessed Ebonie for these items if we can all reach the target.

Please help Ebonie with your generous donations!

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Updates

3

  • Gemma  Westerman and Matthew Calvert4 months ago
    Gemma  Westerman and Matthew Calvert

    Gemma Westerman and Matthew Calvert

    4 months ago

    Update on Ebonie... Unfortunately we have had to cancel our fundraising event for this month due to Ebonie been extremely poorly and requiring tests, examinations and surgery which was decided by her gastroenterology consultant last week. We hope you can understand that family comes first and that Ebonie and the family will be spending the best part of this year in hospital. We have postponed the event until next year, everything is already booked and organised so please do come along and support us all next year ☺ We will keep you updated!

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  • Gemma  Westerman and Matthew Calvert6 months ago
    Gemma  Westerman and Matthew Calvert

    Gemma Westerman and Matthew Calvert

    6 months ago
    Update from the Page owner

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  • Gemma  Westerman and Matthew Calvert7 months ago
    Gemma  Westerman and Matthew Calvert

    Gemma Westerman and Matthew Calvert

    7 months ago

    We are currently in the process of arranging a fundraising event in hope that we can raise the target which is set for Ebonie to help her live life to the full with the adaptations and equipment which is needed for her to live a safe long life. Regular updates on the progress of this fundraising event will be posted on here or Facebook. Thanks gemma and matt

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7 months ago

Gemma Westerman and Matthew Calvert started crowdfunding

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Page last updated on: 4/30/2018 1:59 PM

Supporters

23

  • Tracey Pinder

    Tracey Pinder

    Apr 30, 2018

    Good luck with your fundraising xx

    £5.00

  • Anonymous

    Anonymous

    Apr 5, 2018

  • Anonymous

    Anonymous

    Apr 5, 2018

    #CharityNinjas

    £4.00

  • Anonymous

    Anonymous

    Apr 4, 2018

  • Anonymous

    Anonymous

    Apr 4, 2018

    #charityninja

  • Susan Michie

    Susan Michie

    Apr 4, 2018

    Good Luck.

    £2.00

  • Anonymous

    Anonymous

    Apr 4, 2018

Gemma  Westerman and Matthew Calvert

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About the fundraiser
Gemma  Westerman and Matthew Calvert

Gemma Westerman and Matthew Calvert

Leeds, United Kingdom

Parents to Ebonie.

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