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My son Jake, was recently diagnosed with a very rare form of primary liver cancer called Fibrolamellar Hepatocellular Carcinoma. It typically affects teenagers and young adults. Currently there is no cure.
Jake wanted something positive to come out of being diagnosed with this very nasty cancer, so he decided to set up a facebook page: Jake Stafford Fibrolamellar HCC. He wanted to raise the profile of this particular cancer because it is so rare. Only 200 people approximately are diagnosed with this Cancer each year Worldwide. This equates to a 1 in 5 million chance of developing this disease.
Jake underwent major surgery on 7th May this year to try to remove the tumours that were growing in his liver and surrounding lymph nodes.
We found out after Jake’s surgery, that the surgeons took 75% of his liver, the surrounding lymph nodes, the coeliac axis and gallbladder. His cancer nurse advised that because the cancer had spread to his lymph nodes, there is a high probability that the cancer will return. We need to get Jake to see the Fibrolamellar Specialist in New York within the near future. There is a possibility that Jake may be eligible to enter a clinical trial that is soon to commence.
Jake was advised that he will need scans every 3 months for the next five years. His next scan is due this coming Wednesday 2nd July, so we are hoping for a clear result.
Since setting up the Facebook page and website, we have been in contact with several other Fibrolamellar patients around the world and have been able to provide information and support to other families. We would like to continue to do this, as we felt isolated and scared when Jake was first diagnosed. We now know that the prognosis for the disease is not as bad as we first feared. Whilst it is still poor, we have since found patients who have survived past the 5 year mark, some for as long as 10 and 13 years, and they are still fighting. This gives us hope.
The response from people since Jake set up the Facebook page has been phenomenal. So we decided to organize a fun day to raise much needed money for Jake’s Appeal. We have been contacting local businesses asking them to donate services to help us raise as much money as we possibly can. The Bouncy Castle Company are providing inflatables for the day and are donating the profits taken on the fun day to Jake’s Appeal. Etees have donated 10 T shirts and are printing more for us to sell. The Badge Company have donated 100 badges showing Jake’s logo. Adband.co.uk are selling Jake’s awareness wristbands on their website and donating £1 to Jake appeal for each one sold. We will be selling T shirts, Badges and Wristbands on the fun day. David Lear of Lazerpics, Newton Abbot designed and created our charity logo free of charge and Mitchell of PC-r.co.uk designed our website for us free of charge. Torquay Academy have also agreed for us to use their grounds to hold our charity event. Jake’s primary school, Barton Hill Academy are having a non-uniform day to raise money for Jake’s chosen Charity, Clic Sargent.
We are hoping to be able to set up the fun day using the wonderful generosity and goodwill of local people and businesses of Torquay. The response so far has been amazing. But we could really do with more help if at all possible please.
We are asking businesses if they would consider donating or providing the following items:
- Printed flyers to promote the fun day
- Torbay council licensed hot food vendor
- Torbay council licensed Ice Cream vendor
- DJ & Soundstage
- Balloons and Balloon Arch
- Qualified Facepainters
- Qualified Nail Technicians
- Qualified Hairbraiding
- Volunteers to help run stalls and to marshall the site
Our fun day is taking place on 23rd August at Torquay Academy, Cricketfield Road, Torquay, between 10am and 4pm. We will need volunteers from 9am onwards.
We would really appreciate any help you can give. If you are able to help, please email firstname.lastname@example.org or message the Facebook Page: Jake Stafford Fibrolamellar Fun Day.
Thank you for all your support so far, it has been amazing, we really do appreciate it.
Keep up to date with whats happening in the area by joining us on facebook:
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