How your donations help

Unless otherwise stated all names here are changed to protect the identity of the families.

When we receive an application for a grant it is emailed to all the Trustees and a cheque is only sent out once the application has been agreed by all. Ellie’s Fund BTT Trustees have set certain criteria that each family must meet; unfortunately there are people in the world who make fake applications for the type of grant that Ellie’s Fund BTT provides.

Here at Ellie’s Fund BTT, as with other charities, we want to ensure that the money that you so kindly donate is looked after and that it goes to help the people that it is intended for.

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Here are the stories of the families that you have helped so far:

Dylane’s (her real name) Mum has given me permission to tell you the following:

Dylane, aged 4, was diagnosed with a malignant brain tumour, a medullablastoma, in October 2010. She’s undergone chemotherapy and radiotherapy, and operations that left her unable to walk or talk. Dylane is very determined though, and just 6 months later she was back at school with her friends, albeit with some health problems left by the tumour and treatments. Her mum wanted her to have a special 5th birthday party. Ellie’s Fund were delighted to be able to help.

Dylane’s Mum says:

‘I have just received your cheque in the post and I am overwhelmed. I can’t believe the generosity of your charity. I’m shaking with excitement about how the party can pan out. Please pass on my thanks to the members of your charity and all those who work tirelessly for such an amazing cause. It makes a huge difference to people like us who are currently going through this situation.’

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Eloise was diagnosed with a metastic atypical teratoid/rhabdoid tumour when she was 14. The family were offered a short trip to a charity holiday home but, because of Eloise’s illness, are struggling financially. Our grant means that they are able to have this family break – the money will be spent on fuel, food and entertainment.

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Justin is 13 and has a brain tumour. Unfortunately now on palliative care; his grant is paying for him to fulfill his dream of having some flying lessons.
Justin sadly passed away in the autumn of 2011, having experienced his flying lessons.

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22 month old MJ has a brain tumour – a pilocytic astrocytoma – diagnosed in September 2011. The parents have 3 pre-school age children. MJ’s pushchair is no longer sturdy or comfortable enough for him. Mum has found a suitable one, but it is £500. We are happy to pay for this for the family.

Children affected by pilocytic astrocytoma can present with different symptoms that might include failure to thrive (lack of appropriate weight gain), headache, nausea, vomiting, irritability, difficulty to coordinate movements and visual complaints. The complaints may vary depending on the location and size of the tumour. The most common symptoms are associated with increased intracranial pressure due to the size of the neoplasm.

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Sophie is just 3 years old (2011). She loves playing games on a borrowed iPad. She spends a lot of time in hospital. The £500 we have sent will buy her an iPad of her own for her birthday, which will also be spent in hospital. She too has a brain tumour.

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11 year old Daisy was diagnosed with a tumour of the Pineal Gland (brain tumour), very suddenly, in September 2011 and has already had several surgeries. Her mobility is now very poor and Mum can no longer carry her up the stairs.

She is due to leave hospital shortly so Mum has organised for a stair lift. It costs £60 per month. Ellie’s Fund BTT Trustees are happy to be able to help with this essential cost.

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Toby’s mum is a single Mum from the Borough of Scarborough. The money that we sent – £500 – paid for their dog to be kennelled so that Mum could stay in hospital in Leeds with her child. It is hoped that Toby will make a full recovery from his cancer.

His Mum text after she received the cheque to say ”Thank you so very much, you have no idea how fantastic your timing is.”

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Jon is almost 5 (2011). In July 2011 he was diagnosed with a second recurrence of a posterior fossa Grade 2 Ependymoma – a slow growing tumour, but one that causes severe problems for the sufferer. (As do all brain tumours.)

Jon’s Dad applied for a grant to help the family with household chores.

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Elizabeth’s Dad is disabled and unable to work. His benefits do not cover the cost of petrol to the hospital, parking and food for himself and Elizabeth.
Our grant means he can continue to visit and spend time with his terminally ill daughter.

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Richard is an older teenager. He has had several brain and spinal tumours over the last 10 years. Now on palliative care he is limited in what he is able to do but is able to continue with his love of music. His wish is to spend some time in a music studio recording, and to buy some more equipment.

Richard’s Mum sent this email:

‘Thank you very much for the cheque of £500 you sent for Richard. He was absolutely thrilled to bits and is looking forward to getting into the studio and to playing his first gig – with just a bit more practice !
Your daughter’s spirit lives on through these acts of kindness. Lord knows they are sorely needed in these challenging times.
Best Wishes’

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Elijah and his family live in inadequate housing for the size of his family. They are trying to move, but with Mum looking after Elijah, trying to raise a bond is proving difficult. The grant that we sent will provide this bond, with the money from their current bond being used to furnish Elijah’s room once it is returned to them.

Elijah was diagnosed with anaplastic ependymoma in January 2013 – aged 9 & a half.

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We worked with fellow Yorkshire charities to help a 2 year old with a brain tumour to regain some independence:
Carol Robertson from Brain Tumour Research and Support Across Yorkshire wrote to us:

“Having been left with mobility problems from his treatment, ‘Jack (his real name) needs a trike to get around the farm where they live and to be able to play on. Mum has seen a specialised trike costing £925 that would be ideal for Jack. I wondered if Ellie’s Fund BTT and Levi’s Star would consider funding this?”

We will be giving a cash donation to the family but wanted to do this as part of the Center Parcs holiday break, so they don’t have to incur costs in getting to Sherwood Forest, meals, activities etc

Like so many brain tumour affected families, they are just lovely, hard working, caring people who are doing their best for their family under really difficult circumstances.’

Ellie’s Fund BTT Trustees were delighted to be able to help with this – as were Levi’s Star.

jack

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Lana is almost 18 (February 2012). She’s had a dificult time through her brain tumour treatment as treatments have affected her badly. (As they do a lot of children). With her birthday approaching, Ellie’s Fund BTT offered to help her have a fabulous dress made especially for her party. Lana is in a wheelchair and having a dress made will ensure that it fits her properly and hangs perfectly.

On February 29th 2012, 2 weeks after her 18th birthday, and party, Lana sadly passed away in her Mum’s arms.

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9 year old Daniel was diagnosed with a brain stem glioma in summer 2011. Brain stem gliomas are usually found in children between 5 and 10 years old and are very challenging to treat because of their location – Daniel is now on palliative care.

His grant will be used for ‘treats’.

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Tom is a young man (almost 24) who has struggled with losing his independence because of a brain tumour.
We were happy to provide a grant for him to pay for some help around the house.

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In May 2012 we received a grant application for Joseph. At the time he was in a hospice having been diagnosed with a brain tumour a year before when his family had been told that he had ‘weeks’ to live.

Early this year Mum and Dad both lost their jobs due to taking time off to be with their son who by now had survived longer than expected.
The family spent weeks with him at a hospice, and Mum and Dad started receiving letters from the bank about their unpaid mortgage.

As it happened all of our Trustees were available and responded to my email immediately on the day that the application came through. The request was for money to pay the mortgage. The cheque was written and posted straightaway.

Joseph died later that evening.

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Tyler has just celebrated his 25th birthday (he was 24 when he applied for a grant). He is currently (September 2013) on a dream holiday after being diagnosed with a grade 4 Glioblastoma in September 2012.

His tumour is terminal.

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Medullablastoma is the most common malignant brain tumour found in children. Aggressive surgery, radiotherapy and chemotherapy can help. Matthew was diagnosed with a medullablastoma this year (2011) aged just 6. He faces the treatments mentioned above.

His grant will be used for ‘treats’.

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Billy has relapsed 7 years after previous treatment for a Medulloblastoma (May 2013). First diagnosed aged 4, Billy is now on palliative care – his parents would like to take him out for some fun trips whilst he is still well enough.

Children with medulloblastoma, (a type of malignant brain tumour), undergo extensive and debilitating treatment, which has led to marked improvements in survival rates over recent decades. Despite this, these tumours will return in a proportion of patients following treatment (termed relapse), and the vast majority of these will succumb to their disease.

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Mohammed started treatment for a relapsed Pilocytic Astrocytoma in June 2011, having been intially diagnosed with it in May 2010. He is currently just 5 years old (August 2012).

Mohammed’s bedroom window frame is rotten and his bedroom draughty. We were happy to send a grant to have his window replaced.

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Adele was just 8 months old when she was diagnosed with a Pilocytic Astrocytoma. Currently off treatment (August 2012) her Doctors have advised that the tumour is likely to return.

We were happy to help the family fund a visit to spend time with relatives this summer.

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Born in 1994, older teenager Amber is now on palliative care having been diagnosed with a Medulloblastoma in January 2011.

She is busy creating memories for her friends and family and we were pleased to be asked, and to be able to help fund a weekend trip to Scarborough for Amber and her friends. (August 2012)

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Liam is a member of a local family – though he lives out of Scarborough with his Mum now.

14 year old Liam was diagnosed with a Germ Cell Tumour in early 2012 and has been through chemotherapy and surgery and is currently undergoing radiotherapy. (August 2012)

Germ cell tumours are a type of tumour that can be benign or malignant. They grow from germ cells, which form from eggs in women and sperm in men. During normal development of an embryo and fetus, germ cells usually become eggs or sperm. However, if germ cells travel to the brain by mistake (metastatic), they become tumours. Germ cell tumours are often diagnosed around the time of puberty. They tend to affect boys more than girls.

We were happy to help the family with travelling costs during this difficult time.

In June 2012 the family held a fundraising event and donated £800 of the proceeds to Ellie’s Fund Brain Tumour Trust. This is more than enough for a grant for another child. Thank you to everyone involved in the fundraising.

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Nathan was diagnosed with a stage 4 medulloblastoma just before his second birthday (2011). The grant that we sent will enable Mum and Dad to pay someone to help them around the house while they spend time as a family.

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8 year old Alex is on palliative care. She was diagnosed with an Anaplastic Astrocytoma in February 2011. Her parents would like to take Alex and her brother on a family holiday to Center Parcs. Ellie’s Fund BTT and Josie’s Dragonfly both sent grants to make this possible for the family.

Anaplastic Astrocytoma is categorized as a grade III brain tumor. It is a glioma that evolves from star-shaped glial cells or astrocytes that assist nerve cells. Anaplastic Astrocytoma has tentacles that attack surrounding cells.

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We have also helped a family from West Yorkshire. The family home was broken into twice in the space of 2 weeks – and although nothing has been taken (the dog barked both times) the family are understandably shaken. In this case it is Dad who has the brain tumour. He is on palliative care and has 3 children.

Ellie’s Fund BTT Trustees feel that this is an exceptional case and agreed to help out. Dad has had the tumour for many years but he became terminally ill last year (2011) He is unable to work and so money is extremely tight. The family home now has a burglar alarm.

Very sadly, Dad passed away on August 1st 2012, age 42.

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Born in 2007, Simone was diagnosed with a brain stem glioma in early 2012.

Her health is now deteriorating and treatment has been stopped. Our grant is going to buy some treats to make her last days as fun and comfortable as possible.
A brainstem glioma is a cancerous glioma tumor in the brainstem.

Around 75% are diagnosed in children and young adults under the age of twenty, but have been known to affect older adults as well.Brainstem gliomas start in the brain or spinal cord tissue and typically spread throughout the nervous system. Brainstem gliomas are often primary brain tumors, and rarely metastasize, or spread, to affect another part of the body

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Sophie’s parents have given permission for us to use her real name.

Born in 2008, Sophie Burchill was diagnosed with an anaplastic ependymoma at just 11 months old and had about 18 months of treatment.

This was followed by scans and regular check-ups but Sophie’s family were devastated to be told that the tumour had returned in late 2012.
Sophie is currently (November 2012) in America, to receive 10 weeks of proton therapy. Our grant has helped with the costs involved in this trip, a trip that will hopefully prove very successful for the family.

Anaplastic ependymoma is a type of malignant ependymomas tumor commonly found in young patients. These tumors grow rapidly and many people who develop them will experience complications or even die. This is especially true if the tumor is not caught and treated early. The majority of these growths, although rare, appear in children and adults that are younger than 25 years old. Tumors like this can appear in older adults, but are much more rare.

Ependymoma tumors grow from cells inside of the brain cavity or spinal column. Depending on where the tumor is located, it can produce several different symptoms. Difficulty walking, trouble sleeping, memory loss, and vision impairments may occur because of an anaplastic ependymoma. Tumors that are situated at the back of the brain may block off cerebrospinal fluid, causing vomiting, headaches, and nausea. A child may become uninterested in food and eating because of the anaplastic lesion.

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Sophie after her first diagnosis
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Taking part in ‘Wear a Hat day 2012’ before her symptoms returned

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Samina was born in 2001, diagnosed with a brain tumour in November 2011 and bowel cancer in May 2012, whilst on treatment for the brain tumour.
This means that her future is unknown, as she developed the bowel cancer whilst already on treatment.
Very sadly, Samina’s mum has also been diagnosed with bowel cancer this year and is on chemotherapy.
Patients who are on treatment need to take extra care with their food preparation and most are only able to drink cooled boiled water.
The family’s fridge has broken making food care very difficult for them. Our grant will buy a new one for them.

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April was born in 2006 and diagnosed with a diffuse pontine brain stem glioma just a week after her 6th birthday in February 2012.

She has a very poor prognosis, being given tablets to extend her life. April’s parents just want to create some happy memories by taking their daughter on days out and maybe a trip to London.

Diffuse pontine gliomas are located in the brainstem, at the base of the brain. They are usually diagnosed in children aged five to 10. The diagnosis is made by specific symptoms and MRI features. Because of its location, there is a risk associated with surgery and a biopsy is usually not done. They are difficult to treat because the tumour cells grow in between and around normal cells. It is impossible to remove a tumour in this area because it interferes with the functioning of this critical area of the brain. Radiation is the mainstay of treatment.

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Aashif was diagnosed with a grade 4 glioblastoma in June 2011 when he was 6 years old. It was treated but returned in November 2012. Now on chemotherapy – temozolomide – Aashif requested an iPad for Christmas. With 3 other children in the house this stretched the family a bit far.

We bought the iPad the week before Christmas and posted it to the family – along with a small donation for each of the other children to buy themselves a treat with.
Glioblastoma multiforme (GBM) is the most common and most aggressive malignant primary brain tumour in humans. Despite being the most prevalent form of primary brain cancer, GBM incidence is only 2–3 cases per 100,000 people in Europe and North America.

Treatment can involve chemotherapy, radiation, radiosurgery, corticosteroids, antiangiogenic therapy, surgery and experimental approaches such as gene transfer.
With the exception of the brainstem gliomas, glioblastoma has the worst prognosis of any central nervous system (CNS) malignancy. Prognosis is extremely poor, with a median survival time of approximately 12-14 months and is almost invariably fatal.

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Helen is now almost 9 (September 2013) and will be a year into 18 months of treatment for Atypical teratoid rhabdoid tumour of the pineal region.
She has been travelling to Sheffield hospital several times a week. The car broke down and has left the family with a very large repair bill and unable to get to hospital. Our grant paid for the car to be fixed.

Atypical teratoid rhabdoid tumour (AT/RT) is a rare tumour usually diagnosed in childhood. Althoughusually a brain tumour, AT/RT can occur anywhere in the central nervous system including the spinal cord.

Because it is highly malignant, AT/RT has a high mortality rate. Current research is focusing on using chemotherapy protocols that are effective against rhabdomyosarcoma in combination with surgery and radiotherapy.

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Ben was diagnosed with anaplastic ependymoma in February 2013, aged almost 10.

Symptoms that can be produced by ependymomas depend on the location of the tumour. Ependymomas are typically found in three major locations: the posterior fossa (the area of the brain below thetentorium, containing the cerebellum and the brainstem), the supratentorium (the area of the brain above thetentorium containing the cerebral hemispheres), and the spinal cord. 5 In adults, >75% of ependymomas arise within the spinal canal, but in children, about 90% arise within the brain in the posterior fossa, in or around the fourth ventricle and only 10% arise within the spinal cord.

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