Tag / family story
While there is no cure, cystic fibrosis is so close to being a liveable disease. There is a lot of hope.
News • Mar 12, 2018 11:23 GMT
Charlie Aitchison underwent lifesaving surgery when he was just two days old after being diagnosed with a blocked bowel. Over the weeks that followed his parents were supported by The Sick Children's Trust at Treetop House and were never more than a few moments from his hospital bedside. Charlie was diagnosed with cystic fibrosis, a life-limiting illness when he was just three weeks old.
News • Mar 08, 2018 16:30 GMT
Destiny Nevard and her Mum, Karen, feature in our new film, which showcases the charity’s vital work in helping families when they need it most. Find out more about Destiny's amazing journey after she was hit by a car and suffered life-threatening injuries. Fortunately, we were able to provide her family with a room in Stevenson House just moments from her intensive care bed.
On 22 December I thought my daughter wasn’t going to make it, but just 72 hours later she woke up and shortly afterwards my partner, Trevor, proposed to me in the lobby of Stevenson House.
News • Mar 07, 2018 11:38 GMT
When Chloe fell ill in December 2015 her mother, Emma, became very concerned. A few days later Chloe was rushed to their local hospital in the middle of the night, where she was intubated and transferred to London for lifesaving treatment. During this time we supported her family at Stevenson House with free 'Home from Home' accommodation.
This was my second time being supported by The Sick Children’s Trust at Eckersley House and once again the charity proved to be a lifeline during a very stressful time.
News • Mar 06, 2018 11:36 GMT
Adrian and his partner Emma stayed at Eckersley House whilst their newborn son, Aston, recovered from a lifesaving operation in LGI earlier this year. Aston was born with a huge 2kg tumour growing at the base of his tailbone. The horrified parents could not have been more grateful to The Sick Children's Trust when they were given a room and moved in before Aston's terrifying 11.5 hour operation.
If I hadn’t had a heart attack when Ellie-Marie’s older sister was born, I wouldn’t have given birth in a specialist paediatric hospital and it is unlikely Ellie-Marie would be here today
News • Mar 01, 2018 19:05 GMT
Ellie-Marie had a very rocky start to life with doctors struggling for 45 minutes to establish an airway. Fortunately she was born at Leeds General Infirmary and the specialist team were able to save her. She spent months in hospital having been diagnosed with a rare condition, Pierre Robin Sequence and whilst she was receiving lifesaving treatment we supported her family at Eckersley House.
News • Mar 01, 2018 10:21 GMT
Before Mabel was born, she was give just a 50% chance of survival. However, when she entered the world, she proved to be a little fighter and defied the odds set against her. For weeks she was treated at The Royal London Children's Hospital and during this time we supported her parents and older brother at Stevenson House.
Knowing your baby could stop breathing every time they go to sleep is a terrifying reality that turns your world upside down.
News • Feb 28, 2018 09:00 GMT
Baby Sydney-Rose was diagnosed with necrotising enterocolitis and had to be transferred by emergency to The Rosie Hospital in Cambridge, over 90 minutes from her family's home. We supported her family at Chestnut House. Shortly after that we supported the Keatings again at Stevenson House when Sydney-Rose stopped breathing and required further lifesaving treatment. Mum, Tate, tells their story.
News • Feb 27, 2018 09:00 GMT
Born with gastroschisis Nelly was transferred by emergency to The Royal London Children’s Hospital shortly after birth. At just 12 hours old she underwent the lifesaving operation to put her intestines back into her body. The operation was a success and for six weeks whilst Nelly recovered in hospital we supported her parents with a room at Stevenson House.
News • Feb 26, 2018 09:38 GMT
We are currently supporting Kylan's family at Crawford House while he undergoes treatment at Newcastle's Royal Victoria Infirmary. Mum Amy has shared his story ahead of Rare Disease Day this Wednesday.
News • Feb 26, 2018 09:30 GMT
Kylan was admitted to Newcastle's Royal Victoria Infirmary where he was diagnosed with a rare, life limiting muscle disorder. His family are currently being supported at Crawford House.
I can’t put in to words what it feels like to be told your two year old daughter has a life-threatening brain tumour. And that it’s growing so deep inside her head that they might not be able to remove it all.
News • Feb 15, 2018 09:00 GMT
Mum, Dani Spence, stayed with us at Magnolia and Treetop House whilst her daughter, Lacey, underwent lifesaving treatment to remove a brain tumour in Sheffield Children's Hospital. Fortunately Lacey is now out of hospital and recovering well. Here Dani tells her story.
Having a room to stay in at Acorn House gave us a quiet place to be together and reflect on how lucky we had been.
News • Feb 12, 2018 11:36 GMT
Pollyanna's parents were supported by The Sick Children's Trust at Acorn House after she underwent lifesaving surgery at just 12 weeks old.
News • Feb 09, 2018 16:11 GMT
Charlie and Ross were supported at Stevenson House when their daughter, Eva, was born prematurely at 27 weeks.
Ella got a new heart after five months in Freeman Hospital. A lot of that time she was on life support and it felt like we were too, but getting a new heart finally brought my baby back to life.
News • Feb 08, 2018 14:56 GMT
Ella was just 11 months old when her heart began to fail. Six months later she underwent her first open heart surgery at Freeman Hospital in the hope that her heart could be repaired, but this wasn’t to be the case. It was decided her only chance of survival would be to have a heart transplant and her family began the agonizing wait.
No sooner had I given birth to my baby he was taken away from me for lifesaving treatment, it was heartbreaking.
News • Feb 07, 2018 09:33 GMT
Davey was born with a condition called congenital diaphragmatic hernia – a birth defect causing a hole in the diaphragm, allowing the organs from the abdomen to move into the chest. While he was receiving specialist treatment at Leeds General Infirmary we supported his family at Eckersley House.
It was so nice to bring James over at dinner time so that we could all eat together and be as we would be at home.
News • Feb 06, 2018 09:04 GMT
James was involved in a motorbike accident in which the bike caught fire and was rushed to Newcastle’s Royal Victoria Infirmary - an hour away from home. For the next nine weeks, his parents Claire and Louis along with James’ younger brother stayed at Crawford House, with family visiting and spending time there until he was well enough to be discharged home.
We had been told about Scott House but had not been expecting the level of comfort, not to mention how close it was to the hospital.
News • Feb 05, 2018 13:09 GMT
Olivia was born with Ebstein's anomaly, a rare heart condition which accounts for just 1% of congenital heart conditions. Since she was born, she has undergone specialist treatment at both the Royal Victoria Infirmary and Freeman Hospital in Newcastle upon Tyne, where we have supported her family in Crawford and Scott Houses.
At a time when we were completely lost and didn’t know what to do with ourselves, we were given a place to go.
News • Jan 30, 2018 13:24 GMT
At just a few days old, Amelia underwent major heart surgery after being diagnosed with a aortic narrowing and large hole in the heart. She was then admitted back to Freeman Hospital just before Christmas 2016 where she underwent went open heart surgery. On both occasions we supported her family at Scott House and to say, Dad Paul ran the Great North Run last year, raising £2,000 for us and CHUF.
When Summer-Mae was strong enough we were invited to take her to a tea party at Treetop House and we caught up with the other families and staff.
News • Jan 22, 2018 18:23 GMT
Summer-Mae was born in November 2008 and is seriously disabled. Last September, while the family of nine were on a family holiday together, Summer-Mae became seriously ill and had to be ventilated and placed into a medically induced coma before being transferred to Sheffield Children’s Hospital. We supported her family whilst Summer-Mae recovered.
Since the stem cell transplant, Thomas’ immune system has developed and I can’t believe our little boy will be six at the end of January
News • Jan 22, 2018 10:06 GMT
Thomas' parents stayed at both Eckersley and Crawford House when their baby son, Thomas, was seriously ill as a baby. Finally it was discovered that Thomas had a rare primary immune deficiency disorder meaning that he did not have the ability to generate antibodies needed to fight off infections and would require a stem cell transplant when a donor became available.