for children with neuroblastoma in palliative care
Alfie Sharpe was born on the 19th August 2007. Cheree and Steven describe their only child Alfie as “The most beautiful boy in the world. Cheeky, happy, full of character and with the most infectious laugh imaginable; his smile would melt anyone’s heart.”
In September 2011, Alfie became unwell and after numerous visits to his doctor was taken to Accident and Emergency at their local hospital in Kilmarnock. Tests and scans revealed that Alfie had stage 4 neuroblastoma – an aggressive childhood cancer. Neuroblastoma is the most common cancer outside the brain in children under 5 years old. In most cases it is only diagnosed when it has already spread throughout the body, making the cancer ‘high risk’.
“We were devastated” say Cheree and Steven “but we vowed there and then to never give up. We had to keep fighting to get Alfie better.”
Little Alfie’s treatment regime included 8 rounds of rapid COJEC chemotherapy, 4 rounds of TVD, 2 rounds of MIBG therapy, surgery to remove the tumour and high dose chemotherapy with stem cell transplant. Sadly with minimal response to treatment, Alfie required further chemotherapy to try and clear the disease.
At that time, the family began fundraising for NCCA UK (now Solving Kids’ Cancer) to help Alfie and other children like him, should he need to follow an expensive treatment path not yet available in the UK.
After 8 rounds of temozolomide with irinotecan Alfie was able to receive long infusion immunotherapy with CIS retinoic acid here in the UK.
At the end of October 2013, after 2 years of continuous treatment, Alfie’s parents received the news they had all fought so hard to hear. Amazingly, 6 year old Alfie showed no evidence of disease. “We never gave up hope that Alfie would one day be clear of this disease,” say Cheree and Steven.
For Cheree and Steven, this was the second most amazing day of their lives, the first being when their precious, wonderful Alfie was born.
Throughout all of his treatment Alfie remained full of beans with an immense passion for life, having as much fun as possible. Fire engines were always one of Alfie’s favourite things. He knew everything there was to know about the fire service and loved going to his local fire station where he was made an honorary member. Cheree says “He truly couldn’t wait to be a big boy and be ‘Firefighter Alfie Sharpe!’”
The family began planning their future together; holiday’s, parties, Christmas and things they wanted Alfie to see and experience in life. A united family, this amazing journey forward was supposed to be one free of neuroblastoma.
Devastatingly, in March 2014, Cheree and Steven’s world was torn apart. “We found out that neuroblastoma had returned. Alfie had disease in the brain and this time there were no further treatments available anywhere that could help him. Our son was now terminally ill, just 2 weeks after completing all of his treatment”, reveals Cheree.
For Cheree and Steven, faced with such traumatic news, their priority was for Alfie to experience as many of those lifelong plans as possible in whatever precious time they had left.
“We wanted to make every moment magical as our fairytale was not going to be happy ever after. No amount of time would have ever been enough”, say Steven and Cheree.
Alfie’s loving parents had just 5 ½ weeks with their amazing son from the moment they learned he was not going to get better. During that time memories were created that were to be cherished forever.
Cheree explains, “Alfie was a child, a farmer, a chef, a superhero, a racing car driver and a fireman but most of all, away from the hospital and relentless medical procedures, Alfie was happy. Surrounded by love and his family, he was one in a million, right up until the very end. Neuroblastoma may have had Alfie but Alfie didn’t have neuroblastoma. He never let neuroblastoma stand in his way. He was utterly inspirational.”
Alfie’s best-loved foods were sausages and garlic pizza and he loved many things in life including Disney characters like Belle and Princess Sofia. He believed in fairies and all things magic as well as Superheroes.
Whilst trying to come to terms with the loss of their own hero Alfie, Cheree and Steven reflect on what Alfie would have wanted. “We know Alfie would want other heroes and princesses to have opportunities to create happy memories. These happy times would be loved and treasured forever by children and their families. Alfie was determined to never give up hope or stop believing and this is why we have decided to set up ‘Alfie’s Wishes’”
Steven and Cheree say “We will forever love Alfie more than words can describe and our hearts ache with a hole that nobody could ever fill. Alfie, you are truly amazing and perfect in every way.”
Love Alfie’s Mummy and Daddy
Make a donation
[donate name=”alfies-wishes” title=”Alfie’s Wishes”]
Or donate by:
- Just Giving
- Texting ALFY52 and your amount (£1-£10) to 70070
You can find out more about Alfie here.
Alfie’s Wishes is a grant for families to organise a wish or special treat for their son/daughter receiving palliative care for neuroblastoma. Please read these FAQs along with Alfie’s Wishes terms and conditions and grant application form.
By Wish, we refer to an experience to the maximum of £2,000.00. This could be a special holiday and could cover the child’s immediate family up to the maximum value of £2,000.00 per family. Other Wish categories could be ‘I wish to be…’, ‘I wish to meet…’, etc.
By Treat, we refer to a desired item that a child may wish to have, specifically requested to the value of up to £2,000.00.
3.1. Solving Kids’ Cancer (SKC) families who reside in the UK and are in the difficult position of palliative care for their son/daughter’s neuroblastoma.
3.2. Parents/Guardians who have held a fundraising Journey/Appeal with SKC can apply on behalf of their child.
3.3. Young adults aged 18 or over receiving palliative care for neuroblastoma can refer themselves using the same form.
Only one Wish or Treat is available per family.
5.1 In the first instance please complete the Alfie’s Wishes online enquiry form which can be found at solvingkidscancer.org.uk/alfieswishes or contact the Family Coordinator, Vicky Inglis at email@example.com or call 07740 107 483 to discuss your wish for your child.
5.2 Complete an Alfie’s Wishes Grant Application. This is available by contacting Vicky Inglis on the above details or by visiting the SKC Alfie’s Wishes website solvingkidscancer.org.uk.
6.1 All sections to be completed with as much detail as possible including the breakdown of expected costs.
6.2 Please add any other information that you would like Solving Kids’ Cancer (SKC to know e.g. if the WISH is a surprise, if you would like the Family Coordinator to order the TREAT on your behalf, if you would like an SKC representative to present the TREAT on behalf of Alfie’s Wishes…
6.3 SKC will contact your child’s consultant on receipt of Alfie’s Wishes Grant Application – this is purely to support your application by verification. Please sign to consent to SKC seeking medical information about your child.
6.4 If your child is 16 years or over he/she must also give consent and sign.
Send the completed application form via email to firstname.lastname@example.org or post to Solving Kids’ Cancer, Can Mezzanine, 49-51 East Road, London, N1 6AH.
8.1 An acknowledgement email from Vicky Inglis will be sent to confirm Solving Kids’ Cancer (SKC) have received your application.
8.2 In accordance with 1 and after 3.3 the Family Coordinator will send the application to the CEO for authorisation. In her absence this will be sent to an SKC Trustee.
8.3. SKC aim to notify you within 2 weeks of receiving your application if your application is successful.
8.4 SKC will send a hardcopy letter of confirmation and electronic version.
9.1 You agree to use the funds as intended in the application and for no other purpose.
9.2 If the WISH plans or TREAT options change, please consult with Vicky Inglis, Family Coordinator e.g. your child may become too unwell to travel to access your original WISH plans. We can switch the application over to a Treat application instead of a Wish. Alfie’s Wishes keep a record of Wishes/Treats granted to share with the public about the work we do.
9.3 You will keep all invoices/receipts and submit to Solving Kids’ Cancer’s Head of Finance Imran@solvingkidscancer.org.uk for our audit purposes within one month of the receipt of your WISH if applicable.
10.1 Alfie’s Wishes relies on donations to enable the Solving Kids’ Cancer (SKC) to sustain the provision of a grant towards Wishes and Treats for children receiving palliative care.
10.2 With your permission, SKC will share your story through story text, photographs and/or video footage for promotional purposes – please give signed consent.
10.3 Unless otherwise stated, you agree to take photographs for SKC to use on social media to highlight the work we do.
10.4. SKC will respect your choice of photographs in respect of the sensitivity of the situation.
10.5 SKC will notify which photographs are to be used before posting in the public domain.
11.1 All donations are paid into Solving Kids’ Cancer’s (SKC) general funds to further its general charitable purposes. The funds raised by this Appeal are not restricted for Alfie’s Wishes. However, the trustees of SKC have agreed to designate 93% of funds raised by Alfie’s wishes to offer financial assistance towards a Wish or a Treat for children and young adults receiving palliative care for neuroblastoma. We will use the remaining 7% to pay for SKC administrative and fundraising costs. We are very grateful for your charitable donation.
11.2 For further information about SKC and how we spend donations, please see our FAQs.
Alfie’s Wishes belongs to the SKC and more information about the charity and what we do can be found by visiting solvingkidscancer.org.uk.
Terms and conditions
- By applying for a grant from Solving Kids’ Cancer’s (SKC) Alfie’s Wishes, you agree that:
- You are an NCCA UK family who has held a fundraising Journey/Appeal with SKC.
- You reside in the UK.
- Your son/daughter is receiving palliative care for neuroblastoma.
- If your son/daughter is over the age of 18, they can self-refer.
- Understand that the Wish/Treat requested has a maximum value of £2,000.
- Only one Wish or one Treat is available per family as per these terms and conditions.
- You provide all the required information as outlined in the application form.
- Referral will be through the SKC Family Coordinator.
- You consent to SKC contacting your child’s oncologist for verification on receipt of your completed application.
- Your son/daughter must consent and sign if 16 years of age and over.
- SKC will send an acknowledgement email to confirm receipt of application.
- SKC will send the application to the CEO for authorisation.
- SKC will notify you within 2 weeks of receiving your application if your application is successful.
- SKC will send a hardcopy letter of confirmation and electronic version.
- You use the funds as intended in the application and for no other purpose.
- If the Wish or Treat options change due to unforeseen circumstances, you will notify the SKC Family Coordinator.
- You will keep all invoices/receipts and submit to SKC Head of Finance Imran@solvingkidscancer.org.uk for our audit purposes within one month of the receipt of your WISH if applicable.
- SKC will keep a record of Wishes/Treats granted to share with the public about the work we do.
- With your permission by signed consent, SKC will share your story through story text, photographs and/or video footage for promotional purposes.
- Unless otherwise stated, you agree to take photographs for SKC to use on social media to highlight the work we do.
- SKC will respect your choice of photographs in respect of the sensitivity of the situation.
- SKC will notify you as to which photographs are to be used before posting in the public domain.
- Alfie’s Wishes belongs to the SKC.