Follow us on facebook, and spread the word about our events!
We are a Charity recently set up by Levi's Family and close friends.
Our aim is to provide holidays, gifts and treats for Children and their families who are and have been affected by 2 childhood cancers, Retinoblastoma and Osteosarcoma. As a family we understand the importance of spending quality time together and making treasured memories. Levi's Project will help enable these special moments to happen.
Our ongoing task is to continuously raise money by holding a variety of fun days, fundraising, charity auctions and selling our merchandise online. We also hold an annual charity fun day to help raise much needed funds.
Keep an eye out for upcoming events on our events page!
We are setting up a charity to raise awareness and to help other children and families who are affected by 2 terrible cancer's Retinoblastoma (eye cancer) and Osteosarcoma (bone cancer.)
Levi was born on 8th July 2000 at 2:28 pm weighing in at 8lb 6oz. He was a very happy baby and life was normal up until Levi turned 18 months when I noticed that his left eye appeared very different compared to the right. After being referred to Saint Bart’s in London I was told that Levi had Retinoblastoma, a rare eye cancer that mostly affects young children. As a result of this Levi lost his left eye and was then treated with Cryotherapy and Chemotherapy. After many journeys, checkups and treatments at The Royal London Hospital and also coping with a prosthetic eye to replace the one he had lost, I was given the all clear around Levi's 5th birthday.
The news was music to our ears and this meant we could start looking forward to the future. Levi was a very clever and funny young man and dealt with his eye loss incredibly well. There was one occasion following a visit to hospital for a replacement prosthesis, Levi asked me if he could look at his old one. Levi opened the pot and moments later the prosthesis rolled down the bus. This was Levi all over. Life continued as normal. Levi often got into trouble at school because he was known as the class clown.
In August 2013 just after Levi's 13th birthday he started to complain about a pain in his left upper arm. There were no marks or bruising visible and I put the discomfort down to growing pains but watched him closely. Levi’s arm became very swollen very quickly so I took him to the local Hospital for a checkup. An x-ray confirmed there was no break or fracture but instead showed a growth on the bone. Our worst fears had come back to haunt us. Levi was diagnosed with Osteosarcoma. Further tests then showed that the cancer had spread to his hips and lungs. We were given the devastating news that no treatment would cure him. However, Levi remained strong until he passed away on 21st January 2014.
His family and friends would like to thank every single person who was part of Levi's short but special life and ask you to continue supporting Levi's Project.
Hopefully with the help and support from all who knew him and those who didn't, we can keep his comical spirit alive and reach out to other's that are going through similar situations.
Levi's mum x
OS is a very aggressive bone cancer and is the sixth most common cancer in young children, although cancer in young people is quite rare in general.
Other disease's connected with Osteosarcoma include: Paget disease, Retinoblastoma, Werner syndrome and Bloom syndrone.
Os occur's mainly in young male's between 15 - 25 as the bone's are growing quickly, although it is not just a child related cancer and can also affect the older generation too.
Around 400 - 1000 case's are diagnosed in the US each year and about 530 new case's in the UK.
OS is difficult to diagnose, an x-ray or bone biopsy will determine whether the person has Osteosarcoma.
Most patient's will complain of pain that is more uncomfortable at night time and if there is swelling then the tumor is thought to be quite large, this can result in brittle bones and can cause a fracture or break.
Os doesn't have a stage system like other cancer's, instead it has 2 different levels, Localized - only found in 1 part of the body and Metastatic - has spread to other part's of the body, most commonly the lung's. Patient's with localized OS have a much better chance of treatment than those with the metastatic form.
Osteosarcoma is most frequently found in the long bone's with 42% in the femur, 19% in the tibia and 10% in the humerous, with only 8% found in the skull, jaw and pelvis.
Fun for all the family with lots of excellent games and shows
We are looking for stall holders, donations, volunteers
The first person that was treated for RB was Gordan Isaac's on 11 January 1957. His right eye was removed and the left eye was treated with external beam radiation therepy.
There are 2 type's of RB, a heritable form and a non-heritable form, around 55% of children with RB have the non-heritable form.
Retinoblastoma affect's around 5000 children a year, most of these children are younger than 3.
Chromosome 13 - Human's usually have 46 chromosome's in each cell, divided into 23 pair's including 2 copie's of chromosome 13, 1 from each parent. C13 is made up of around 115 million DNA and represent's 3.5 - 4 % of the total DNA. This particular chromosome also contain's 300 -400 gene's that provide instruction's for making certain protein's, these protein's perform a variety of different role's in the body. RB is caused by abnormalitie's in one of these genes and is is called the RB1 gene. Although most of the case's of RB are caused by this change a small percentage result in the gene missing completely.
In most case's RB only affect's 1 eye ( unilateral ), a smaller group have RB in both eye's ( bilateral.)
Treatment varie's by each case, some of the treatment's can be invasive for eg: Enucleation ( removal ), Chemotherepy and Intra-arterial chemotherepy, other not so invasive treatment's include cryotherepy, thermotherepy and external beam radiotherepy.
Sign's and symptom's of RB can include loss of vision, a squint known as cross-eyed, or a change to the pupil ( cat's eye reflex ), this is the most common sign.
In 95% of Retinoblastoma case's the patient is cured, however they may lose an eye.
Retinoblastoma can be a serious and life-threatening disease, although with early detection and treatment a child's eye and life can be saved.
More info is available at http:/www.retinoblastomainfo.com/