Your friends are fundraising. Don't miss out, opt in.

255 %
£1,275.00
raised of £500 target
by 64 supporters
Donate
Cherrelle ord avatar
Cherrelle ord

The Ord's

we are both running The Great North Run 2019 for TOFS because we want to raise awareness

255 %
£1,275.00
raised of £500 target
by 64 supporters
Donate
  • Team members: Cherrelle Ord & Dean Ord
  • Event: Simplyhealth Great North Run 2019, 08 Sep 2019

TOFS

We help children & adults born with TOF/OA to ease living with this rare condition

Charity Registration No. 327735

Story

In September 2017 Reese was born by emergency section following a complicated pregnancy. Unfortunately she was very distressed and needed resuscitation, however, we already knew she had a very rare birth defect called oesophageal atresia, confirmed week 23 of pregnancy. Born unable to swallow, her oesophagus was not joined to her stomach and ended in a blind pouch leaving a huge gap in between the two. After a life saving surgery at 16 weeks old when her stomach and oesophagus were finally joined together, Reese then went onto suffer oesophageal leak, saliva leaking into her chest cavity through a hole at the surgery site for four months solid. She had lots of ups and downs but she coped amazingly well throughout, with numerous chest drains at one point. Finally after 8 months of living in hospital the worst was over, the leak had closed and we finally got to bring Reese home where she belongs. She has done amazingly well ever since and has come on leaps and bounds, she is mainly peg fed but she's finally started to eat little bits of food and this will only get better with time, she gets oesophageal stretches every few weeks which will eventually iron out as the years go by and in the end her peg button will be removed and no longer needed. Her strength has been unbelievable from day one. The TOFS charity is very close to the hearts of our whole family as it provides awareness and support to parents and families of babies born with TOF/OA from birth to adult life, as most people have never heard of this condition which is extremely complex ranging from minor to major issues for each individual, with many suffering with secondary birth defects such as heart, renal and spinal problems. Reese's secondary is that she has only one kidney which is fully functional and healthy, although her first 8 months were the hardest months of our lives, we still feel that we have been extremely lucky in her case. The TOF Society were amazing, they supported us with all the fears we had regarding the condition, the major surgery she had to go through, the complications that followed, they were there to support even if there wasn't an answer, even if it was just to make us feel better on a bad day. TOFS is ran by the parents and families of TOFling babies the people who have a true experience of this condition supporting people who are new to it all, people who are scared for their babies just like we were in the beginning, a much needed support network at a very frightening time.

Photos

3

Supporters

64