Our son Harry is the most courageous, fun loving 10 year old with the biggest of personalities & an attitude to go with it! He embraces all life has thrown at him with the cheekiest of smiles & love in his heart. If Harry loves you, then he loves you with everything he has....He loves life, & living it to the maximum.

He is one half of our amazing dynamic duo twin boys who were born premature in May 2014 at 31 weeks due to severe Intrauterine growth restriction (IUGR) during my pregnancy. Harry weighed just 630grams when born & his brother Thomas was 1.3Kg. Both boys were born with very different complexities for reasons that remain unknown. Harry was found to have a double aortic arch & severe hypospadias while Thomas was born with the congenital abnormality bilateral fibular hemimelia, which means the bones in his lower leg did not form or grow as they should. The twins continued to go from strength to strength with the outstanding care they received in the Evelina London Neonatal unit & were discharged to our local neonatal unit.

On the 8th of July 2014 our world changed forever when Harry became acutely unwell & was blue lighted back to Evelina & diagnosed with Necrotising Enterocolitis. I will forever be thankful to the South Thames retrieval team who were in the unit to collect another baby & after taking one look at Harry instantly decided he needed to be the priority.

So many times we were moved to the bereavement room to prepare us for the worst, but each & every time Harry showed his true strength & surprised everyone by surviving everything NEC could throw at him...once again because of the outstanding expertise, care & compassion from the neonatal team at Evelina London. On one occasion when Harry was too sick to make it down to the operating theatre, the team worked their magic once again & bought the theatre to Harry & operated on him in the NICU!

Harry spent his first 14 months in hospital. As a family we celebrated every milestone together, one the most important being the Twins 1st Birthday when we held the most amazing party in the Evelina Children's Hospital atrium...attended by none other than Daniel Craig himself after filming scenes for James Bond on Westminster Bridge!

Soon after this we faced a further challenge as Thomas underwent his amputation surgery at TWH at just 13 months old. Just like his twin Brother, Thomas smashed his surgery & was able to come home after just one night! With the support of prosthesis & his trusty Kaye walker known as 'the tractor' he was walking within 6 months!!

Harry finally come home on 21st July 2015. As a consequence of his complexities & the devastating effects of NEC he has severe short gut syndrome & is tube fed, he has complex hypospadias, severe growth restriction, double aortic arch, VSD (hole in the heart), chronic lung disease with tracheomalacia ( where the cartilage in the traches/windpipe is floppy & narrowed) & profound, multiple learning difficulties. He has undergone 20+ surgeries & battled sepsis & metabolic acidosis more times than we can keep count of. After another bout of metabolic acidosis in June 2024, we discovered that Harry's kidney function was abnormal & after further investigations we were told the devastating news that he now has stage 3 Chronic Kidney Disease which has been progressing rapidly. We know that Harry would not be suitable for kidney transplant & almost certainly, his tiny fragile body could not manage 3 x weekly dialysis & so he will be supported on a palliative care pathway with the main focus being symptom management in order to optimise his quality of life

As a family, our wish for Harry is for him to be able to live the life he loves for as long as possible. Anyone who knows Harry will know how much he loves an adventure, & more than that how much he loves an adventure with Characters & dressing up as his favourite characters....whether this be a day at Legoland or Chessington, his beloved Peppa Pig world or Drusillas or a week at his favourite Haven holiday park partying with his Brothers & George the blue Gorilla. Like many parents , we have have dreamed of enabling our boys to experience the magic of Disneyland & seeing the look on their faces walking through those very special gates! Harry's palliative care team have advised against long haul travel with him now & so our wish would be to take the boys to Disneyland Paris if we can.

Rather than waiting for the inevitable & living a lifetime of regret, we want to enjoy every last moment together & this is where we need your help! Both Gary & I work full time & it takes us time to save for our family adventures, unfortunately time is just something we no longer have any control over. One of the hardest thing I have had to consider in all this is actually being brave enough to ask others for help! So many people have asked how they could possible help us over the years & this is always a difficult one to answer as we try to do all we can ourselves. We are very proud parents of twins with complex disabilities & a wonderful big Brother, & often life can be a struggle for one reason or another & while I appreciate money does not change that... any donation you make will mean we can build Harry a bucket list of fun & laughter which will give us all a lifetime of memories to cherish.

Now, being someone who always has to find the positive in any situation to find a way through, & in a moment of madness I have decided I will take on the challenge of a sky dive with some very special buddies to support our family fundraising endeavours. Maybe, just maybe the thought of me throwing my chubby backside out of an aeroplane & wondering if the parachute can cope with the task at hand will be the deciding factor in donating a few pennies!

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