My good friend's son in law is running 7 marathons in 7 days with his best friend to raise money for Great Ormond Street and has asked me to publish this article and maybe you would like to donate to the Leukemia Fund. Details at the end of the article.
Tom and Simon (Mez)
Toby is the son of Nathan Hambrook-Skinner who went to school (Christ College Brecon) with Simon and me. Toby's dad was best man at my wedding. In recognition of Toby's bravery and the incredible work done by staff at Great Ormond Street to support Toby, his friend, his lovely wife and all the very ill children there, Mez and I will be running 7 marathons in 7 days, covering 183 miles which is the distance of 7 back to back marathons starting on Saturday 13th May from Brecon to Great Ormond Street Hospital.
Toby was born on 16th August 2016, he was diagnosed at 8 weeks with Acute Myloid Leukemia (AML) Toby is being cared for and treated in Great Ormond Street Hospital on Lion Ward where he has resided since (including his first Christmas).
Both Toby and his equally brave parents are being looked after by the wonderful and simply brilliant staff. Toby is a beautiful happy and brave little boy but he is very sick. Against all the odds, he still manages to smile.
AML is rare in such a young baby, after an initial positive response to chemotherapy (he was in remission before Christmas), Toby relapsed in the New Year and will now have to have a Bone Marrow transplant as long as his latest chemotherapy is successful (waiting for MRI in early February to confirm if he can go ahead with the Bone Marrow transplant).
A Bone Marrow match has been found.
The money raised will go directly to Great Ormond Street hospital charity to fund new equipment and research into treatment techniques. An example of research that is specific to Toby is research into Imunatherapy which is commonly used to treat ALL therapies, but not AML as there is little research done into AML as it is a far rarer form. This therapy won't be an option for Toby but it could be for babies who end up in Toby's situation in the future.
Ben Smith, Simon (Mez) and Tom
Legendry marathon runner Ben Smith, (401 marathons!!) paid us a visit and the highlights of Ben's advice were to eat pizza and stop at coffee shops along the way! We were so grateful to Ben to give up an hour of his time to help with advice.
If you donate, Justgiving will send your money directly to Great Ormond Street to help them continue their amazing care of the incredibly brave and very ill children, and their parents that need it.
Thank you so much.
EDITOR: An update on Toby from Tom's wife. Toby had his stem cell transplant last Friday but his body started to struggle so he is now in ICU. He is stable but he is extremely poorly so we keep praying!
Here are a couple more updated photos to share with you. Isn't he a lovely looking baby!
A new update from Thomas Turtle on 8/2/17.
Toby is still in ICU fighting. He has a collapsed lung due to infection. His new immune system (Toby had his bone marrow transplant a couple of weeks ago) is beginning to show signs of kicking in; Toby is no longer neutropenic. This means he can begin to fight the mega infection in his lung.
Written by Tom Turtle
EDITOR: It is with great sadness tha I have to report thatt Toby passed away on 16.3.17, exactly seven months after he was born. The marathons are still going ahead to raise much needed funds. R I P Toby, what a brave little boy.