As they came to terms with the fact that their baby son had a rare liver disease, Rob and Hannah Mayor from Carnforth decided they would raise would try to raise £5,000 each year for Children’s Liver Disease Foundation (CLDF).
The support from family, friends and their community means they are well on course and Rob is hoping that his participation in the Great North Run next weekend will help him reach this year’s target.
“Finley, who is our second son, became very poorly soon after his birth last June and after tests at our local hospital we were transferred to Leeds General’s Children’s Liver Specialist Unit,” said Hannah.
“It was a very scary time for all of us as we didn’t understand what was wrong. After lots of tests, X-rays and scans and what seemed a long wait we finally got a diagnosis for Finley, which was Alpha 1 Antitrypsin Deficiency, a very rare genetic liver disease, for which there is currently no cure.
“Finley’s condition has to be closely monitored and he goes for regular check- ups, blood tests and scans with his consultants in Leeds.”
Finley will never be allowed to drink or smoke or be around any smokers as this can cause irreversible damage to both his liver and lungs.
The worst case scenario is that his liver deteriorates and he needs a liver transplant, but we have to take each day at a time and let him lead as normal life as possible.
“Obviously our world has turned upside down,” Hannah said.
“It’s difficult to explain to people as no one has heard of it, but we have finally come to terms with it and decided that we should focus on fundraising to promote the charity and to raise as much money to help fund research so hopefully one day there will be a cure not only for Finley’s disease but for the other rare liver conditions affecting many other families.
“Rob has never done any running before but he has taken his training for the Great North Run really seriously and he is now pretty confident of completing the course in a reasonable time.
“We are fortunate to have enjoyed great support from our local community. Events we have been involved in this year include a charity football tournament, 10 mile sponsored buggy push organised by our eldest sons nursery, a 34 mile sponsored canoe and bike ride organised by a local football team and a raffle at a dance show arranged by my sister-in-law.
“This has all been fantastic and helped us raise a lot of money for CLDF. If we could reach our target with the Great North Run, it would really help us feel we have given something back to a charity which has been a great support to us.”
CLDF’s fundraising manager, Rachel Murphy said: “CLDF is the UK’s leading charity dedicated to fighting childhood liver disease.
“Research is a vital part of our work, together with providing information, emotional support, and a voice for families affected, because research is what gives families hope for the future.
“In order to continue our work, however, we rely on community fundraising for the majority of our income so we’re very grateful for the fantastic fundraising which the Mayors have undertaken this year – it really is appreciated.”
To support Rob’s Great North Run visit http://www.justgiving.com/FinleysDaddyxxx/
For more information on CLDF visit childliverdisease.org.