You may or may not know Mr Barrie Shutt...he is a well known Budgie Breeder in the UK.
If Barrie Shutt has helped you with your budgies over the years then please consider helping him right now.
Please read and if you can help at all with bringing this to everyone's attention it would be so very much appreciated.
Emily is Mr Shutt's Granddaughter and he is trying to raise funds to send her to London for treatment.
Thanks for reading.
Thank you for taking the time and trouble to read this....any help is greatly appreciated.
This has been cross posted from another site.
Posted by Mr Shutt
March 19th 2012
Three weeks after Emily’s second birthday she was diagnosed with Leukaemia (ALL )
Acute lymphocytic leukaemia (ALL), also called acute lymphoblastic leukaemia, is a cancer that starts from the early version of white blood cells called lymphocytes in the bone marrow (the soft inner part of the bones, where new blood cells are made).Leukaemia cells usually invade the blood fairly quickly. They can then spread to other parts of the body, including the lymph nodes, liver, spleen, central nervous system (brain and spinal cord), and testicles (in males).
The next 28 months
Emily and her family unknown to them were then going to be facing many miles of daily travel, unscheduled stop overs at Newcastle as poor Emily went through many procedures comprising of chemotherapy intravenously through her port, several lumber punctures intrathecal to help protect her brain, regular bone marrow aspirations plus chemo daily when she was at home.
Where are all of these bone marrow donors when you need one we asked and then we got some fantastic news as a donor was found with a perfect match of 12 out 12 .The donor was her brother, her best friend and her life saver Alfie.
Before transplant Emily had to go through fourteen weeks of intense treatment to prepare her for the transplant. This little girl was very poorly during the next eleven weeks in hospital, suffering lots of pain and discomfort and for seven weeks she was pumped with morphine. Her legs were splinted as she could not walk having spent so much time in her sick bed.
Jan 2014 was very special as Emily was allowed home for a few weeks.
February 2014 Emily returned back to the RVI to be prepared for the transplant. Again she endured more intense treatment and nine sessions of radiotherapy, six of these were fully body treatments and three to her head.
Next the bubble unit on ward three at the RVI where visitors were down to four until after Emily’s transplant, this included Mum, Dad and her best buddy Alfie who would go eight weeks without seeing his sister. This was now the family home where shift patterns were needed as her parents alternated between caring for Emily and Alfie; difficult times for all were now more intense and many hours and days of tears rolled down everyone’s faces.
March 27th 2014 Emily has her transplant donated by her brother Alfie. Two wonderful brave children both sharing not only the same bone marrow but the same pain, discomfort and hope for the future , they make me so proud to be their grandfather.
Fourteen weeks later and armed with seventeen different meds and a car load of teddies we are going home.
After living at times surviving on a pittance thankfully supported by our many friends who supported Emily’s Fund and helped not only the family but also the RVI who received a generous donation that we hope will help other sick children and their families in times like this. A huge thank you from the bottom of my heart to you all for you kindness and support.
Two and a half years later things were starting to have that feel good factor for us all, regular hospital check-ups were telling us all how Emily was winning her fight to survive and enjoying life to the full for the first time since her second birthday in 2012
Early February 2015 things sadly began to change when Emily started complaining of pains in her arms and legs, she was sleeping more during the day, her energy levels were at a low, she was crying with headaches, her eyes were googly and she held her head to one side, we took her straight through to the RVI. Nothing was to be found by her team at the hospital but more tests would be carried out on her next follow up visit.
February 26th 2015
Emily’s bloods were taken and were showing to be good, she was then taken to the theatre for a bone marrow aspiration to try and find out the reasons for her body pains. A few hours later we were told our worst fears, Emily had relapsed for the second time eleven months after her transplant. We were all gutted.
Very little leukaemia was found in Emily’s bone marrow but sadly our hearts were broken when we were told Emily had suffered her relapse in the central nervous system which is the spinal fluid leading to the brain. One day before this little girls fifth birthday the world around us seem to stop when we told to prepare for the worst.
The next day February 27th 2015 was spent in the care of her wonderful team at the RVI Newcastle, Emily was back into the theatre for a lumber puncture to administer treatment into her spinal fluid. Once her Doctor found out that we had booked and organised Emily’s birthday party for the following day February 28th all stops were pulled out to make sure she was sent home to enjoy this wonderful event. This wonderful little girl sang and danced her heart out and shared with all of her wonderful friends on a day when emotions and tears were difficult to control by the family.
Since Emily’s relapse our little girl has showing so much strength during her treatments, eleven lumbar punctures, seven doses of intravenous through her port, seven 15 day courses of steroids and chemo at home. Each day now is a different story a she can suffer sickness, aches and pains from the horrible but necessary treatments yet this amazing child takes everything that is thrown at her with such determination, she is such an inspiration to us all and we will never stop caring and loving this fantastic young lady as we strive for someone to switch that light on again.
I did tell a few little untruths on Emily’s Journey page to protect some of our friends with the sad news, I did make sure plenty of pictures were posted of a smiling Emily to make us all feel good behind this sadness I am now sharing with you all.
Many appointments were attended at the RVI Newcastle combined with staff and parent meetings; one piece of great news was of a trial starting in January 2016 at Great Ormond Street in London which can hopefully include our Emily and give her a lifeline.
Even though our little princess is doing as well as can be expected at the moment and her Doctors are so pleased with her she still has a long way to go in her fight to survive this terrible disease. We need to get her back up to 100% treatment (she is on 75% now) and keep her as healthy as we can over the months leading up towards the trial.
The last six months continues to be very difficult for mum, dad and Alfie as they and myself of course are taking everything day by day and sharing one prayer “ please do not take this little girl away from us “
I am planning with friends to have some fund raising events which will help finance living and travel costs in London for the family, if London fails us we will be looking at America’s medical teams who lead the way towards successful treatments and cures. If London answers our prayers then Emily’s fund will be used to help other sick children who need that special care, love and understanding
Any offers or ideas of fundraising are most welcome guys, just PM me on Facebook.
Please do not contact Emily’s parents as life is very difficult for them both in these sad times.
A big thank you all from my heart to everyone who has cared, shared, loved and become part of the family, take care guys.