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Registered Charity No:
1128027

Scotland OSCR No:
SC 042679

       
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AP318 – Leah is 6 years old from Pontefract
Leah suffers from Down syndrome, she had to have heart surgery at 4 months of age to repair a complete atrioventricular canal defect, and she now needs further surgery to fix or replace her value which is now leaking. She has to have a heart scan every 6 months as her cardiologist is monitoring her weak left side of heart due to a stroke after surgery. Her family would love to take her on a family holiday with sisters to have some much needed family time. We would love to send this deserving family on this much needed holiday but can only do so with your help.

 

AP310 – Regan is 7 years old he is from Birmingham.
Regan suffers from chromosome 4q deletion, learning disabilities, deafness, low muscle tone, behaviour issues and toileting issues. His family have asked for help purchasing a bed and mattress as due to his incontinence his bed needs replacing regularly.

 

 AP326 – James is 8 years old from Mirfield
James he has a rare genetic TAF 1 disorder. Much of James’ behaviour tends to be motivated by seeking sensory feedback. James is able to access a calm/alert state once he has been able to receive vestibular feedback activities such as bouncing on a gym ball/trampoline or using a swing. James has difficulties with his mobility; he can be unsteady on his feet and tire easily. He wears Piedro boots and has a wheelchair for longer distances. In the past James has received fractures from relatively minor injuries, he has been under investigation by the bone Team at Sheffield Children’s Hospital, but has now been discharged. He had low calcium levels and they were also monitoring his vitamin D levels. He has been advised to spend as much time outdoors as possible James has regular Kidney scans to monitor his calcium levels. He had his results in December and has a split in his Kidney which makes him more prone to Urine infections as he gets older. James has been tested for Heart Murmurs when he was 1 year old. It was found that he has a positional heart murmur when he is poorly. They agreed to do further tests in 6 or 7 years’ time. James has a swing in the garden to enable him to access this vestibular feedback but is unable to access a standard swing seat. He needs a seat with a harness to enable him to swing independently. James has grown out of the swing seat he currently uses and needs the bigger size.

 

AP307 – Mohammed is 2 years old from Allerton
Mohammed has congenital heart defect and aortic stenosis, Due to having a heart defect he gets out of breath very quickly and can’t walk for long distances.

 

AP314 – Millie is 7 years old and lives in Birmingham
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Millie has a brain tumour glioblastoma grade 4, hydrophilic shunt and sensory processing difficulties. Her family would like to buy her a specialised garden swing or some sensory toys for her sensory room. Having a sensory swing would benefit Millie as it stimulates her and makes her feel very relaxed. 

 

AP321 – Gabriel 8 years old from Westwood Park
Gabriel has ASD and is diabetic the combination of both conditions makes his daily life quite complex, although he is learning how to control his conditions; he struggles to fully understand how they affect him and control them.

 

AP288 – Favour is 12 from Beeston
Favour is septic and in intensive care. Favour was admitted to LGI with salmonella she then became septic and required intensive care, she remains on the paediatric intensive care ward with excessive fluid on her lungs and a renal issue. In addition to being septic she also requires ventilation. 

 

AP311 – Lawson is 13 years old and lives in Rhyl.
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Lawson suffers from neurofibromatosis 1. His family would like to purchase him a handheld console to keep him occupied during the extensive travel to and from hospital.

 

AP251 – Roman is 5 from Roundhay
Roman has Chromosome 3Q 13.31 Deletion hypotonia, autism, ptosis of the eye and learning difficulties. A 3q13 deletion is a genetic condition that occurs when there is a small piece of genetic material (DNA) missing from one of the 46 chromosomes – chromosome 3. The genetic change usually affects development, and sometimes health and behaviour as well. But how much it affects individuals, and the ways in which it affects them can vary a lot.

 

AP324 – Nour is 4 years old and from Sheffield
Nour was born at 24 weeks and suffered severe brain damage. She has Quadriplegic cp, epilepsy, cortical visual blindness, global development delay, chronic lung disease, and infantile spasm. Her family have applied to us for funding for a summer conductive education at PACES, high green, Sheffield, this will enable Nour to have an intensive block of conductive education. Which will help her to learn mobility, daily living skills and individual focus will be given to her needs.

 

AP312 – Zain is 4 years old and from Sheffield.
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Zain has vocal cord palsy, tracheostomy, chronic lung disease, skeletal dysplasia, profound hearing loss, severe vision loss and cranial stenosis. Zain would like an IPad he loves the touch screen and enjoys watching his favourite cartoons on the hand held device. Zain suffers from a condition which means that he experiences sensory processing difficulties and needs support in learning to regulate his reaction to sensory stimuli. Zain loves to use an interactive touch screen that he only has access to at his school. He spends a lot of time pressing, touching and watching objects move on the screen giving visual and auditory feedback. His family and school believe that if Zain was to have his own IPad at home it would provide a beneficial link between learning at school and at home 

 

AP336 – Kay is 16 years old and from Liverpool,
Kay suffers from cystic fibrosis and is currently awaiting a lung transplant assessment. In the past 2 years Kay has been hospitalised on a regular basis and more so lately. The family have oxygen and a wheelchair for her at home and are hoping to make her bedroom more inviting and comfortable for her when she does get to stay at home.

 

AP337 – Ethan is 12 years old and from Liverpool
Ethan suffers from global development delay, his family would like help with travel, food and holiday cost for their first family holiday. This would be beneficial to all the family as Ethan’s illness effects them all on a daily basis. This holiday will give them all a chance to recharge and will boost family morale.

 

Harry 12 Years old

ap278
Henry is a 12 year old boy with profound physical and sensory needs. He requires full adult assistance for all his mobility and care needs and is unable to move independently. Within Suffolk children such as Henry are provided with specialist seating systems that meet their needs. Unfortunately funding is only available for a single seating system within the home. The seat that Henry has is a JCM Triton chair and costs in excess of £4000; this chair is perfect for Henry for when he engages in sensory play and integrating with his family. However, Henry would benefit from a comfy-style seating system in his home environment. This is a chair that still provides optimal postural support to maintain his alignment to the best of our abilities, but in addition allows him to relax in a reclined and supportive way.

AP280 - TJ who is 13 years old from Northampton.

tj
In May 2009, TJ developed (LGS) Lennon-Gastaut sysndrome which is a life long illness and he desperately needs around the clock care and attention. The family can have a care dog but require help with transport and accomodation costs which will be incurred when training a Sezuire response dog to help care for TJ as this will help him and his family.

AP279 - Aiden who is 15 years old from Glasgow.
Aiden requires a rigorous daily treatment regime that is designed to slow the progress of chronic lung disease
This includes Physiotherapy to clear thick mucus from his chest; Oral and intravenous Antibiotics to treat repeated chest infections; Special high fat and protein diet with additional vitamin supplements and Pancreatic enzymes with all food to aid digestion to help minimise weight loss.
In association with The Butterfly Trust we are helping towards the cost of transport to and from hospital as well as additional food costs incurred as a result of a hospital admission for Aiden.
Aiden's Mum provides a significant level of care for him, his brother Conner and his sister Stephanie, who all have Cystic Fibrosis.

AP141. Alexander who is who is 12 year old.
The Family live in Suffolk.
Illness: Partial Edward's Syndrome, Cystic Fibrosis, Autism, Renal Failure and learning difficulties. The family has had to have the home adapted to meet Alexandra's needs, They are in need of financial support to help with the shortfall of funds to complete the adaptation of his bedroom and bathroom needs.

AP140. Alexander who is 7 year old.
The family live in London.
Illness: Severe Autism. Alexandra's doctor recommends that he has Multifunctional therapy as it will benefit him greatly. he has benefited previously from this type of therapy and responded very well. Unfortunately the funds are no longer available for this. The family are in need of further funding to continue this type of therapy.

AP139. William who is 4 year old
The family live in Doncaster
Illness. Chronic lung disease, Severe uncontrollable epilepsy, Hemiplegia, Brain damage, Autism, Severely visually impaired and is massively global impaired. His visual aids teacher has recommended that William has an ipad which would provide visual stimulation and hand eye coordination, In William's case it would, in particular, help the formation of visual pathways to the brain.

AP138. Elijah who is 4 year old.
The family live in London.
Illness. Autism, ADHD, non-verbal and has extremely limited concentration. It has been demonstrated that the use of an ipad with Autism specific appose assist well with concentration and building basic communication. The family are in need of an ipad to continue this progression

AP138. Isaiah who is 12 year old.
The family live in London.
Illness. Autism and ADHD.

AP137. Request from Great Ormond Street Hospital
Details to be kept confidential

AP136. Rebekah who is 9 year old.
The family live in Norfolk

AP135.Aroob who is 4 year old.
The family live in Sheffield.
Illness: Unexplained hypotonia with severe development delay, myoclonic epilepsy, PEG feeds and sleep disturbance. in need of a shower chair as Aroob has to have 3/4 showers a day. Aroob is now causing mum severe back pain holding her as she weighs 20kg

AP134. Brian House Children's Hospice
Blackpool
Funding to help provide respite care, palliative and end of life care in a "home from home" environment.

AP132. Kacey who is 12 year old.
The family live in East Lothiam

AP132. Michael who is 9 year old.
The family live in East Lothiam

AP131. Harry who is 1 year old.
The family live in Chatham.

AP129. Erin who is 4 year old
The family live in Chester.
Illness: High risk acute lymphoblastic leukaemia. Erin is having ongoing chemotherapy until April 2015.

AP094. Kira who is 1 year old.
The family live in Liverpool.
Kira
Illness: Kira has had surgery at Great Ormond Street Hospital, she has been diagnosed with Secundum atrial septal defect, Failure to thrive with gastrostomy, gastroesophageal reflux, dislocated hip, hypothyroidism and chromosome abnormality

AP061. Parker who is 2 year old.
The family live in Warrington.
Parker
Illness: Very rare type of childhood cancer called Rhabdomyosarcoma. the cancer has attached itself to his prostate gland/bladder. He's having this treated with Chemotherapy. The consultant at Alderhey hospital Liverpool have decided the best treatment/surgery would be brachytherapy administered in Paris followed by more chemotherapy in the UK.
Family, Family friends and local businesses are helping Buttercup Children's Trust to raise funds for Parker.

       
© Buttercup Children's Trust 2009 - 2018. Registered Charity No:1128027. Scotland:SC042679.
Page Last Updated Monday, January 1, 2018 8:41
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