Noah and Freddie- Double Champions!
Noah and Freddie- the inspiration for Sporting Footprints, by proud Daddy Tony
Our identical twin sons, Noah and Freddie were born in March 2009; although seven weeks premature and slow to feed we were able to take them home with no problems four weeks later. But when the boys were 8 months old, Noah became unwell with bronchiolitis, which Freddie developed 2 days later. That winter was spent in and out of hospital as the boys seemed to catch infection after infection and were slow to regain strength. They fought off collapsed lungs, pneumonia, adeno virus, RSV and were placed in their own little head boxes as they struggled to maintain oxygen levels. After a tough winter things really picked up in the summer and we celebrated the boys 1st birthday having been told all the problems were just bad luck they would grow out of these issues.
In September of the boys 2nd year Noah had his first seizure, a day my wife and I will never forget as I’m sure any parent who has witnessed would agree. Sadly this again was something Noah and ourselves would have to get used to as he went on to have several, sometimes prolonged, seizures over the next two years. Noah was found to have a rare brain condition called Periventricular Nodule Heterotopia which, among other things, can cause epilepsy and developmental delay. As of October 2011 Noah has been seizure free and his medication seems to have it under control.
The boys 2nd winter was again a bad one for them as the same respiratory problems returned. Whilst Noah was ventilated in intensive care in Southampton hospital, Freddie was in Basingstoke hospital HDU experiencing similar problems. We were literally torn in two as a family. Noah and Freddie were found to have a lung disease called Bronchiectasis and a lung condition called Bronchomalacia. The next and boys 3rd winter was no less eventful and once again both boys were back in Basingstoke hospital with respiratory distress. Luckily Noah tolerated the BiPap machine to help him breathe otherwise he was about to be ventilated again. We were coping well all together in Basingstoke hospital until Freddie took a turn for the worse and had to be rushed to Southampton Intensive care for surgery as he had Sepsis Ileus and his tummy had effectively stopped working. We were experts on lung problems but tummy trouble was a new one for us.
Noah has since had a peg fitted so we can tube feed him high calorie milk at night as he has barely any interest in food and is failing to thrive. We await news as to whether he will have a colostomy bag fitted this year as he has bowel problems and he has had surgery to remove tonsils as he was struggling to breathe at night.
Our boys amaze us everyday and the support from family and friends has been fantastic. It is the unexpected support from people we don’t know that really touches us aswell. Our community nurse put us in touch with Sebastian’s Action Trust and soon after we had our first stay at The Bluebells. The house is amazing and with the help of Lauren we felt at home straight away. Our boys love to swim but get cold very quickly so the heated pool at The Bluebells was great as we could spend longer with the boys doing something they love. Noah and Freddie get excited every time we visit ‘their holiday house’ and the main thing the house has given us as a family is even more smiles and time for us to get away and just be together.
My wife and I still cannot believe the amount of on going care and support the Trust’s staff give us as a family, from offers of transport to hospitals, use of The Bluebells’ pool and being on the end of the phone, they really go the extra mile.
About the fund
We could never thank everybody at the Trust enough but they have inspired us to set up our own little charity called Sporting Footprints (supporting Sebastian’s Action Trust). Our aim is to raise money through yearly events and use this money to provide sport and leisure opportunities and equipment to the families that use Bluebells.
Running total and target:
- We launched our Family fun day in September 2012 and we managed to raise £1000.
- In December 2012 we were able to donate £500 to help with funding towards a specially adapted wheelchair for a special little girl, Molly, who we met through Sebastian’s Action Trust.
- In March 2013 we raised over £1000 with the help of 10 brave fundraisers who walked 20 miles along the Kennet and Avon canal. This money has been set aside to help fund 2 new drysuits for the Bluebells pool for children with Hickman lines who cannot use public swimming pools.