Children born with Ea-Tef see them on a video Message

You-Tube video’s of the children Born Unable to Swallow

(Let me know if you have a video you would like to share on our you-tube feed)

PLEASE NOTE before running this Video on the right side of you-tube your find (Autoplay) make sure this is turned OFF

Watch and like, this video below, made for the awareness 2017 showing the Children living with this Condition born unable to swallow, made by a Mother of a child with Ea-Tef

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Ella-Rose Ellis has amazed doctors

From Mum, Ella-Rose was born with Charge Syndrome, with that came, coloboma of the eyes and at birth, we were told Ella was, blind and was only told otherwise weeks ago 2017. Ella also has many rare airway defects which have needed over 18 Ellie Charge.. operations so far to keep her airways open we were also told Ella was fully deaf, couldn’t swallow and wouldn’t ever, she has a curved spine and neck we were told she wouldn’t ever hold her own head, never walk either or and because of the operations on her airways Ella’s vocal cords were broken, we were told even if she had Hearing she would never speak and all this was if she survived the first year.

This is why as Parents you must never give up HOPE

Ella-Rose Ellis, looking forward to starting school after delighting medics with her progress.

LITTLE Ella-Rose Ellis has set her sights on starting mainstream school later this year – with the help of her new ‘mermaid’ glasses. The three-year-old – who was diagnosed with a rare genetic condition at birth – has amazed doctors who initially feared she could be blind for life. Mum Clare and Dad Dale were devastated when doctors broke the news Ella-Rose had CHARGE syndrome, which can cause extensive physical difficulties, and might also be deaf, never walk, talk or be able to eat without a gastric tube.

But the thriving tot, who had two holes in her heart, one kidney, breathing problems, holes in her eyes and growth problems, has proved their fears wrong and after numerous operations is about to start Primary School later this year.

Ellie ChargeHer sight is good enough to be helped even more by Disney Princess glasses, and she wears a box on the back of her ear to help her hear. She can speak in full sentences, write her own name, count and knows colours – and enjoys tucking into her favourite spaghetti bolognese and chocolate without needing the feeding tube which has been removed.

Mum said in the local Paper,  “She is our little miracle. We were told she was totally blind and it would be impossible for her to ever see and we were also told she’d never hear anything at all but she can do both. “She had every symptom CHARGE could throw at her but she is doing brilliantly which shows families should always hold on to hope. 

“She loves her new glasses and is really good at keeping them on!” Ella-Rose still has breathing problems because of airway conditions and sometimes needs surgery for that at Sheffield Children’s Hospital. “She also needs oxygen at night because she has sleep apnea. We take all that in our stride,” said Miss Dunne.

Doctors are so happy with Ella-Rose they have just given her the go-ahead to fly abroad so the family, who have two other girls – Millie, ten, and Daisy, eight – have just booked their first sunshine holiday in Spain later this year. “She’s so excited. She’s already trying on bikinis with her sisters!” said her mum.

After Ella-Rose was born she was rushed from Bradford to Sheffield Children’s Hospital where she underwent several life-savingcharge operations. She was operated on when she was five days old and remained in intensive care to keep her breathing until she was finally able to go home when she was three months old.

Her 29-year-old dad has raised more than £1,000 for the hospital’s charity from running and cycling challenges and the family hopes to raise more money as another thank-you for her continued care this summer. “There are still things she desperately wants to do that she can’t yet, like dancing classes or going swimming but we’ll never say never,” said Mum Dunne. “We are so proud of Ella-Rose and her big sisters for how well they have adapted. Life’s not always easy for them but they make the most of it.”

This Mother’s Day, Millie wrote a story for her mum, giving her own take on their family life with Ella-Rose. She wrote: “Ella has two older sisters and I think they’ve really brought her on even though it went through barneys to pulling each other’s hair they still loved her and even though Ella’s illness made their lives difficult they were happy and could not wish for a better sister. “I think Ella’s really happy and lucky to have the family she has and learn from this nothing is impossible or too hard to do everything’s achievable.”

Sanjeev Gupta, the consultant paediatric ENT surgeon at Sheffield Children’s Hospital, said: “CHARGE syndrome is a genetic condition which can cause extensive physical difficulties. “It can be life-threatening and babies often have to spend a lot of time in the hospital going through lots of hospital procedures.imgID106103015.jpg.gallery

“The team at Sheffield Children’s, UK, has been delighted to see the progress Ella-Rose has made. She’s been doing so well and we hope she has a wonderful holiday with her family.”

http://www.thetelegraphandargus.co.uk/news/15226222.Three_year_old_girl_who_defied_diagnosis_is__our_little_miracle__say_family/#

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Lucy Stewart

MIRACLE KID 

Six-year-old raises thousands of pounds for charity while battling a life-threatening disease.

Lucy Stewart has raised nearly £2000 since beginning her campaign in June despite being in and out of the hospital. Lucy, from Elgin, decided to begin her fundraising after receiving an Inspiring Children’s Award from charity Dot Com in June. She received the award for bravery after battling to overcome the everyday effects of her illness.

Lucy began her fundraising with Dot Com’s Challenge 1000 campaign, which challenged people to raise £1000 for the charity by the end of December this year. Her efforts meant that the £1000 target was met in just two months.  Lucy hosted bingo nights and completed the Colour Run in Glasgow to raise the money, despite suffering from a deadly respiratory disease.

Lucy was diagnosed with Tracheo Oesophageal Fistula and Oesophageal Atresia at birth and also suffers from Tracheo Malacia, Bronchiectasis, and Dumping Syndrome.

But despite suffering from health issues, she hasn’t let it stop her from trying to help others. Lucy’s mum Claire Stewart said: “Lucy decided she was going to do the Challenge 1000 to help other boys and girls. “She managed to raise £1000 within two months. We held a Bingo night and did the Colour Run in Glasgow.”

“But Lucy has health issues of her own, so she’s in and out of the hospital a lot.” Lucy’s rare condition means that her windpipe is extremely small. By the time she was three years old, not only had her lungs collapsed but she’d also suffered from swine flu and endured a number of serious operations.

Lucy is constantly on antibiotics to prevent other infections from affecting her health but continues to fundraise for the charities that mean the most to her. Meeting her £1000 target hasn’t stopped Lucy from continuing her task. She began her annual fundraising campaign for the Archie Foundation not long after completing Challenge 1000.

lucy as baby

Claire said: “Every year we usually do something for the Archie Foundation. https://www.facebook.com/thearchiefoundation/

“The Archie Foundation provides accommodation, specialist medical equipment and staff, and stuff for the children in the hospital. “With Lucy in the hospital a lot, we try to do something a bit different to raise money for the charity. She had her dad jump off the pier on Boxing Day a couple of years ago and I abseiled down the Children’s Hospital last year. “But this year, with her being a bit older, she decided she could do something herself. “We made a variety of Christmas treats and Christmas Eve tins and boxes. She’s raised over £700 in the last month doing them.”

“Since June, she’s raised nearly £2000 for charity.”

lucy

Read full story here

https://www.thescottishsun.co.uk/news/369679/six-year-old-raises-thousands-of-pounds-for-charity-while-battling-life-threatening-disease/#comments

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Adult Fund Raisers

Ellen and Belinda (Charge)

(Ellen  & Belinda) are two adults living with CHARGE Syndrome in Australia in our 30’s. We have both overcome many obstacles and challenges and would like to raise $6600 in honour of our 32nd and 34th birthdays. All money raised will go to the CHARGE Syndrome Association. Thank you for any support

ellan

These are two of my CHARGE heroes! Help them raise money for the Australasian CHARGE Syndrome Association!

Hey, everyone, we are two charge adults in Australia. We have overcome many battles over the years as charge kids do and will be turning 32 and34 this year. In honour of our birthdays, we are raising funds for the charge association of ausnz to help with the 2018 conference in Melbourne. Many of us have experienced the true value of a conference. We have professionals from Ais NZ and the USA come and teach us the world of CHARGE. we want to give more families this opportunity not only next year but in years to come. Not only do we hear people talk we reunite with family and friends, share stories and make new friends. There is always a meet and great, a Saturday night dinner and plenty of time to hang out in the bar too. All proceeds go directly to the foundation. These covers hotel costs travel time for our speakers, club charge and more. We have one year to raise 66000. Please help in any way you can contact us for any questions or ways to help. Thank you for your help any amount is appreciated.

https://www.gofundme.com/charge-on-for-charge

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