Isabella M

28 October 2018

Isabella was a happy and healthy 7 year old girl.

In early March this year she came back home complaining of back pain. I gave her some paracetamol, as the teacher said that she did not fall down or hurt herself. The pain remained for a few days without getting worst or better, then one day when it was snowing in the middle of March, Isabella was unable to walk, the pain in her legs was excruciating. She could not stop screaming. I went to the GP and they agreed to book a visit for an Orthopaedic consultant. Time passed by and Isabella felt worse and worse. She was in such pain that one day she vomited from the pain and at that point I got fed up waiting for a referral and I took her to A&E. Twelve hours later Isabella was diagnosed with ALL (Leukaemia). Two days later she started the standard protocol. After eleven days she was allowed to go home for a few days but after two days she was admitted again and her protocol was changed, as from the cytogenetics it was discovered that she had a subtype of Leukaemia called IAMP21 which was more aggressive and needed stronger treatment. She was therefore moved to Protocol C. Being on the highest protocol our options were reduced, and if the chemo was not working she would have to undergo a bone marrow transplant. However, at the end of Phase 2 in August we were informed that Isabella was reacting and we could carry on with the standard protocol. Isabella is now mainly at home and doing Phase 3 (Capizzi Interim Maintenance). She went back a few half days to school, but she is generally very tired. She lost all her hair and she is very upset about that and she is looking forward to being “herself” again. However, she can now move and she has not been using a wheelchair since July.

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Ava S

28 October 2018

Ava was starved of oxygen around the time of her birth. She was extremely poorly as a newborn and was rushed to intensive care for specialist treatment. Unfortunately, Ava sustained a massive brain injury and suffered lots of seizures. Her prognosis was not good, so on the advice of the hospital we switched off Ava’s life support machine and prepared for her to pass away. However, this determined little girl decided that it wasn’t her time to go and has decided to show the world just how much love and joy she can bring into everyone’s lives.

Due to the brain damage Ava has, she can’t walk, talk, swallow safely or use her body the way it was supposed to. She requires full adult support 24/7. She is fed through a gastrostomy tube into her tummy, is suctioned frequently to remove the saliva from her mouth and airways, and is oxygen dependent.

Ava has fought sepsis three times and has spent time in intensive care due to a twisted colon, which was removed and she lived with a colostomy bag for nine months before surgery successfully rejoined her bowel, and then again for a respiratory arrest.

Ava has lots of medications during the day and often uses a nebuliser to keep her lungs healthy.

Despite all of these problems, Ava is a very happy and sociable little girl who is loved by many.

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Chanel M

19 October 2018

Chanel’s brother has severe nut allergies, please do not send any products containing nuts to this family

Story Written 2018

Chanel was diagnosed antenatally with a rare congenital heart defect know as Hypoplastic Left Heart Syndrome with an Intact Atrial Septum – basically half a heart. She has required four open heart surgeries, the first being immediately at birth (The Worlds Youngest Ever Open Heart Surgery Patient), making medical history and paving the way for others born like her. Her most recent was August 2017 when she was 3 and half years old and was also the hardest physically and mentally for Chanel (The first Fontan on a HLHS/IAS in the UK).

Chanel has and continues to go through a lot in her life – she has been tube fed since birth, had a major stroke at 2 weeks old resulting in weakness to her whole left side and cerebral palsy (but learnt to walk at 2 and half years old with the help of a leg splint), had 24 operations and procedures in total, including 4 major open heart surgeries, but is the happiest, kindest, most beautiful little girl ever, always thinking of others. She is utterly inspiring and teaches everyone around her to always have hope. When Chanel deteriorates again she will need a heart transplant, but we take each day as it comes and have every faith that Chanel will deal with anything that may come her way with the same fight and determination she always has.

Chanel loves all things Disney, especially Mickey and Minnie Mouse and Princesses. She truly believes she is a real Disney Princess just like any little girl should. He favourite is Rapunzel. Chanel also loves Peppa Pig, taking photos, and board games with her two brothers.

 

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