About Us

Our charity was created in loving memory of beautiful baby brothers Woody and Winter. Our main commitment is to support very sick children and their families; we achieve this through practical fundraising and giving. We gift comforting items and experiences not ordinarily provided by hospitals to those most in need during the most frightening of times. Our small acts of kindness make the biggest difference to those who we help. Our ethos is to treat our supporters with the highest level of customer service and recognise that every contribution no matter how big or small is simply fantastic. We try to put the “fun” in fundraising and offer our supporters value for their generosity through the ways in which we fundraise.

Pregnancy with Woody was like most others, long and tiring but generally uneventful with no major concerns. Woody was born at Birmingham Women’s Hospital at 40+6 weeks, he was delivered in a theatre due to his positioning but that was the only concern at the time. Amy (Woody’s mum) was unable to hold Woody at birth due to having severe epidural complications leaving her unable to move her arms, we accompanied Woody to the post natal recovery suite where we got to rest and adore him. I, Matthew (Woody’s dad) went to the shop to buy Woody a newspaper with his date of birth on to give as a present on his 18^th birthday. During this time and after around 40 minutes post partum Amy noticed that Woody looked uncomfortable, was making grunting noises instead of crying and had very blue feet. Midwives quickly raised a medical emergency and at this time I'd just returned from the shop with the newspaper. Woody was rushed to the Neonatal Intensive Care Unit and in a flash our baby was taken away from us. It was now just us left in the recovery suite, in silence, completely unaware of what was actually wrong and how the next 23 days would change our lives forever. We were able to visit Woody in the NICU after a couple of hours, I walked beside Amy she was wheeled there in bed as she still was paralysed from the Epidural. We saw our beautiful baby again but this time wired up to so many machines and tubing; a sight so shocking it seemed unreal. Initially they had found a pneumothorax in his lung and he had stabilised somewhat on the life support machinery and medications following reversal of this. For the next 3 days Woody remained on NICU but no progress was made, unable to maintain his oxygen saturations whilst on life support, it was decided that he needed to go to the Birmingham Children’s Hospital for a very specialist life support machine called ECLS. Doctors from the transport service said that it was highly unlikely that Woody would survive the journey and that we should say our last goodbyes. Miraculously Woody survived the journey and was successfully put onto ECLS which is a very long and technical operation; Woody remained on the ECLS machine for approximately 3 weeks. Although heavily sedated and unable to be moved or picked up we got to know Woody, care for him and feed him through a tube. In the 3 weeks at both hospitals we stayed glued to his bedside; we watched him develop and grow and learnt more and more about his personality; he had a cheeky side that melted everybody’s heart. Although every effort was made to diagnose and treat his condition Woody just could not get any better. Woody was eventually weaned off his ECLS treatment and it seemed as if he was doing well for a short time but during that night he fell very ill with incredibly low saturations. The following morning we had to make the impossible decision to withdraw treatment and let him pass away peacefully in our arms. During their first ever cuddle as mum and son Woody passed away after a few minutes, all Woody’s machines and tubing were now gone and it was just like when he was born, our perfect baby in his entirety as a child and not a patient. We spent a good few hours with Woody after he died holding him and looking at him closer than we ever had the chance to previously. In the following weeks and months after his passing we learnt from the Coroner that Woody had an ultra rare condition known as Congenital Alveolar Dysplasia. This condition has a 100% mortality rate and to this date remains untreatable. In laymen terms this disease is characterised by the lack of or complete misplacement of tiny blood vessels that surround the Alveoli, the mechanism in which oxygen and carbon dioxide are added and expelled from the blood stream. We learnt from research that very little is known about this disease. Following the loss of Woody we set up The Woody Alvin Foundation, despite such a short life he has made a lasting legacy and impact. Woody was buried with his favourite teddy bear in the idyllic Worcestershire countryside.

After learning about Woody’s disease and its incredible rarity we were reassured by available evidence that this event would never re-occur and that Woody's condition was a spontaneous one-off. We planned for Winter’s arrival with caution, like the pregnancy with Woody it was fairly uneventful, however mentally it was the longest and most anxiety provoking 9 months of our lives. Doing everything in our power to be healthy and safe was emotionally exhausting as in the back of our minds we knew how wrong things can go; ecstasy to instant despair is an experience we never wanted to have again. After 9 months of routine and some ad-hoc appointments due to worry and anxiety it was time for Winter to be born. Winter wasn’t a secret by any means but this time there was no advertisement, countdowns or baby showers etc. Winter was induced at 39+2 weeks, slightly earlier as to avoid any unnecessary anxiety from our previous trauma. Winter was delivered normally and was crying before he was even fully born. He dived onto Amy and gave her the biggest hug; it was almost if Woody had told him to do this. He seemed fine and healthy and for a very short while we thought a new chapter of our lives was about to start. His cord was cut and he was taken to the trolley to be checked over by the paediatrician. It was instantly apparent that Winter, just like Woody couldn’t maintain his oxygen saturations once the cord was cut. The moment we learnt his oxygen was so low we instantly knew this nightmare was happening all over again. Winter was rushed to NICU and for a second time we were left in silence completely devastated at what just happened. Again just like Woody after a period of time we could go and see Winter in the NICU, not only did the situation seem identical, they looked identical and even were in the same NICU bay with some of the same doctors and nurses having the same investigations and treatment. He looked to have improved once on the same life support Woody had, we were told he needed another procedure and that we would have to go back to delivery suite and wait. Our families came at this point and after some time we were asked to come back to the NICU urgently, Winter really wasn’t coping well and his oxygen sats had dramatically reduced again. Winter had been hypoxic for such a long time the level of brain injury would‘ve been catastrophic. His heart rate was slowing and it was inevitable he would go into cardiac arrest at any moment. We for a second time as parents had to make another impossible decision to withdraw treatment and let him pass away peacefully in our arms. Winter was disconnected from his machinery by the doctors and nurses and handed to us and this time it was me that had yet to hold our newborn child. Winter passed away after a very short time following cessation of treatment and lived for only 5 hours in total. We were allowed to spend the next few days with Winter in the Abby Suite at the Birmingham Women’s Hospital where we got to look at him, hold him, care for him and adore him and all of his features. Throughout the next few days we were visited by family and friends as well as members of our medical team that assisted us the last few months, nobody could have predicted nor believe what happened. Winter has yet to have a formal diagnosis and this is still to be determined but it is hypothesised they had the same condition. Winter was buried with his special teddy bear next to Woody.

Woody and Winter’s legacy will live forever, we hope they can contribute to this incredibly rare disease puzzle. We hope that our charity can keep growing and help other children and families going through unimaginable pain and suffering.

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Woody's hand & Winter's foot