Thank you from all of our families whose life and endless treatment journeys have been made just a little easier as a result of your generosity. Whilst families will always need financial support whilst battling cancer we feel that we must do something about the lack of awareness of the signs and symptoms of Rb amongst parents* and healthcare workers. This lack of awarness means the cancer is silently stealing children's eyes, sight and lives.
A quick diagnosis of Rb can mean less treatment is needed.
It is the time of year when we look back at what has happenedthe previous year. The information we collect is through gently asking parents of recently diagnosed children how their child came to be diagnosed with Retinoblastoma and the route the parent has taken to this diagnosis.We do this is because a quick referral toone of the two UK centres of Rb excellence could mean the difference between saving a child’s eye and sight or having to remove the eye to save their life
I'm sure you can appreciate that retrieving this information from parentshas to be done delicately and empathetically, sometimes there is never a right time for our support workers to ask a parent this, sometimes it is a too traumatic period in the parents lives to go over it again.
Because Retinoblastoma is such a rare disease often family doctor's do not recognise the symptoms and dismiss the parents concerns. Often parents have thought they have seen something odd but dismissed it as a trick of the light, not to see it again for several months. Can you imagine the feelings of guilt a parent who hadn't acted sooner or hadn't asked for a second opinion experiences? No amount of reasurrance will alleviate that pain.
However from the information we collect from parents we know that the awareness raising of the signs and symptoms of this disease (and no one else in the UK is doing this) is slowly making a difference.
CHECT’s awareness raising has reduced the referral time from 9 weeks in 2012 to 6 weeks last year. But there is still more to do to reduce this further - we are aiming for2 weeks. Your support is helping us shorten this time andhelping to save a child's sight, eyes or in extreme cases, life. Thank you.
Little Skylah-Mae is the face of our campaign, and a beautiful one too. We thought you’d like to hear how Skylah-Mae’s treatment is coming along and how many trips her family have made to hospitals and clinics for check ups and treatments. Lesley, the CHECT support worker says "Skylah-Mae's family have averaged a trip every three weeks and these are vitally important in assessing whether Skylah-Mae's tumours are responding to treatment, for vital chemotherapy and other treatments". Like Skylah-Mae’s family these visits which can costs some families £100s.
Mum Gemma says “We've been to treatment clinics and for scans every month this year, sometimes twice in a month - we drive up even though we only get 15p a mile and have to pay £8 for parking each time. If we came by train I would get my travel free but it is too expensive to pay for Skylah-Mae's dad too, and of course he wants to be supporting me and Skylah-Mae".
Despite everything that little Skylah-Mae has had to endure in her young life she is a delightful little girl and the latest photo shows Skylah-Mae with Jacob, who also is battling against Retinblastoma - both children have been attending the Royal London Hospital for the nearly two years. Support worker Lesley says "children with bi-lateral Rb (in both eyes) often undergo years and years of treatment to try to save their sight and eye/s.”
Since CHECT launched this appeal, and with your support we have funded 23 families to a total of £4,600. This is great but we means we are constantly fundraisingtoprovide families with a £200 grant each year of treatment. Please share Skylah-Mae's story amongst your friends and any further support you can give will be greatly appreciated.
J was diagnosed with bilateral retinoblastoma (cancer in both eyes) in August 2013, aged only 3 months. So far he has undergone the removal of one eye and 6 cycles of chemotherapy. His treatment also requires laser and/or cryotherapy directly to tumours in his remaining eye.
During this time J's parents have had to make numerous and frequent visits to three different hospitals:
The Royal London Hospital for regular examinations under anaesthetic and any local treatment he requires. These visits will continue until he is approximately 5 years old.
Great Ormond Street Hospital for insertion of a central line that will deliver chemotherapy and also for treatment for any side effects this invasive but potentially sight and life saving will have on him
Harlow Hospital for admissions when unwell during chemotherapy and prosthetic appointments for his artificial eye.
Although J's parents are not in receipt of benefits, his mother was originally receiving maternity pay, which has ended. She will be returning to work on very reduced hours because of J's condition and the potential for ongoing unknown need for further treatment, as well as regular examinations under anaesthetic.
J's father has needed to use all of his annual leave and take unpaid leave for J's hospital appointments and stays. He has had to leave his salaried position and work on commission only due to the need for him to take time off work so frequently. This has had a significant impact on the family's financial position.
Through the generosity of its supporters and donors like yourself we are able to help ease the financial burden just a little for families with children undergoing treatment for cancer. We would like to do this every year a child is in treatment but we simply don't have the funds. Please help if you can. Thank you.
To find out more about our work subscribe to our CHECT blog.
A huge thank you once again to everyone who is supporting our appeal. On average a child a week is diagnosed with Retinoblastoma (childhood eye cancer) and we are here to provide emotional and practical support as well as a little financial assistance when it is needed the most. Since we launched our GlobalGiving page in late November already your support has made a big difference to ten families - just like Alex's below.
Alex was diagnosed with the type of eye cancer that is heritable, which means he can pass on the cancer gene to his children. Not that Alex thinks much of that as he is only 15 months old.
It was in March this year that Alex's family heard the dreaded words that no parent should have to hear "your child has cancer". Alex lives in Scarborough, UK which means that he and his family have to travel to Birmingham Children's Hospital every 4 weeks for Alex's eyes to be examined under anaesthetic. On top of these examinations he and his family also regularly travel to Leeds so Alex can have lifesaving chemotherapy treatment.
Alex's mum stays at home to care for him and his dad works 16 hours a week - the family have already travelled over 4,000 miles for treatment - and a family with a child with cancer shouldn't have to worry about how they are going to get to the next treatment.
Project Reports on GlobalGiving are posted directly to globalgiving.org by Project Leaders as they are completed, generally every 3-4 months. To protect the integrity of these documents, GlobalGiving does not alter them; therefore you may find some language or formatting issues.
If you donate to this project or have donated to this project, you will get an e-mail when this project posts a report. You can also subscribe for reports via e-mail without donating.
Get Reports via Email
We'll only email you new reports and updates about this project.