Team Olly & Dee will be walking 130 miles in April to raise money for ROYAL MANCHESTER CHILDREN HOSPITAL  .  I will be walking 100 miles and he will walk 1 mile a day . 

Back in January, my brave and courageous nephew Olly underwent his second decompression surgery . With covid restriction and fear of spreading the virus, I was unable to cuddle him and tell him everything will be ok . I wanted to desperately let him now how proud I am of him. And whilst taking part in another Charity walking event , I decided to show him I am so proud of him and let him now how is inspires me and everyone around him by pushing myself to walk 100 miles in April. 

After Ollys surgery I told him about my plans and asked him , who we should raise money . The charity that researched his condition or one the hospital that’s looked after him and  helps all children . His big caring heart chose to help all children  and I wouldn’t of expected anything less .  Olly has decided to doesn’t just want to sit on the sideline and will be WALKING 1 MILE A DAY THROUGHOUT APRIL to help raise money. He is so excited to get started!!! 

This is also a chance for me to pay it back for looking after my nephew, sister , brother in law and niece . As you can imagine having a child go through major surgery is scary but having to deal with that at the height of a deadly pandemic was petrifying . Especially with this condition   

I would also like to raise awareness for hypo pituitary. 

To help you understand how much of a warrior my nephew actually is , here is his story as told by my sister : 

Ollys story! 

Olly was born 13/07/2014  through an emergency C-sections. That morning  I was woke up at 5 with an hour long stomach pain m, it soon went but something just didn’t feel right so I went to the hospital to get  checked.  From there it all happened so quickly! We went in to a small room where they checked Ollys heart beat and within 15’ minutes from walking in the building I had a very worried nurse grabbing a wheel chair and rushing me round to a theatre room. I remember it so clear,  the urgency in her voice as she shouted at people around. The next thing I remember  I’m waking up with no baby,  no partner and my mum and my dad, pale faced looking at me. Telling me to rest and go back asleep, I remember asking where Olly was and my mum kept telling me “he’s fine just rest”. Little did I know I had lost over 40% of my blood and extremely poorly. Later that day, I still hadn’t seen him but  they told me Olly had to be transferred to another hospital to get help breathing. I remember saying they weren’t allowed to take him anywhere until I had seen him, I couldn’t move and  I was  unable to get out of my bed, I couldn’t get to him. They brought him to me, this beautiful baby boy, I don’t remember how many wires there was I just remember his face. He was perfect! I knew he would be safe, his dad would be with him but it killed me him being so far from me. Immediately I asked what I needed to do to get to him, so I started pushing myself. The next evening I was transferred to the same hospital! 

I remember going down to see him, ventilated and hooked up to lots of machines. He was so poorly but knowing what we know now I understand what was going. I asked where his dad, they said  he hadn’t  left Ollys side all day and they sent him to go get some sleep. He wouldn’t leave so he slept on the canteen chair. I have never loved him more! Ollys body was closing off,  his potatasium and sodium levels were not balancing out. They did lots of scans of his brain and his body to see what could be causing his body to be reacting like this. He was born at 36wks and 5 days,  so 2 days before full term, he was a good weight, nothing shown up on scans beforehand, so he was a mystery. We found that his left ventricle was weak at contracting,  so monitoring would be needed. Nothing that needed medicine. We also found that he had a condition called situs inversus, his organs are on the opposite side of his body and his small intestine is towards his right and large intestine on his left, but again his heart was in the correct position so this did not bring lots of concerns,   people live with this and don’t know. Still we had no answers as to why this had happened. Slowly  Olly started to be weaned off the ventilator, which was unbelievable !!! My little warrior was fighting strong.  We were transferred back to north Manchester to get stronger and go home. Olly then struggled with gaining weight it was never easy for him, he was sick after nearly every feed and we were all baffled. Turned out he had a milk intolerance too, my milk was making him sick. But even when we changed the milk, he was still sick. He went through light treatment for jaundice too but it just kept coming back. Test were done at 5 weeks to check for different conditions and it shown that he was thyroid deficient. Which then lead to the endocrine department getting involved from the Royal Manchester Children Hospital. . At 7 weeks he was checked to see if he was adrenal insufficiency, which is was. We were told he has a condition called hypopituitarism, this is where his pituitary gland isn’t sending the correct signal to his thyroid and adrenal gland. We started medication straight away. It all didn’t make much sense at the time but this is why his body struggled so much at the beginning of his life, the shock of being born sent his body into an adrenal crisis. The shock of being born nearly killed him!! 

We were still in hospital and Olly still being sick. We didn’t understand, we had changed his milk we had started medication why was he still sick what was going on. At 10weeks old the decision was made for him to have a labs procedure to see if there was an obstruction with his intestines and if they were twisting. It turned out he had lots of cartilage covering areas of his small and large intestine which they removed. At 11weeks and 5 days we were able to go home. Finally reunited all four of us together brother and sister and no more passing ships for us parents. It was perfect. 

The months that followed were hectic, we had so much learning to do about his condition and had so many appointments. We learnt from a MRI at 6 months that his hypopituitarism was caused due to his pituitary gland being underdeveloped. He is deficient in all his hormones. We learnt how serious and life threatening his adrenal insufficiency is. His body doesnt produce the right amount of cortisol it needs to cope with day to day living. So emotional and physical stresses are life threatening to him. When he is ill if we don’t pick up quickly enough on his early signs he can become very ill very quick and his organ start to slow down. Every where we go we have to carry a medical bag with his normal medication in plus an emergency kit Incase it is ever needed in an emergency . . Sadly We have experiences several adrenal crisis where we have been blue lighted to the hospital after finding Olly unconscious or lethargic with teething, colds and viral infections. You can imagine our concerns this last year! 

All this going on but you could never meet a happier little boy. He is truly one of a kind. He has a certain way in which he lights people up. Has has an ability to light up the most darkest of rooms. I always say his happiness, positivity and kindhearted way of looking at the world and everyone is infectious. 

We notice that since he started taking growth hormone the circumference of his head was increasing, it was a side affect that we hadn’t known about. He was now needing surgery for a vp shunt at the age of 2,  this was to help drain fluid from his brain so no damage was caused. Olly was amazing so young and still smiling and being his cheeky chap talkative self with everyone. After two years of slowly trying to increase his growth hormone safely he needed further surgery again this time to help stop fluid on his spine, he had his two top vertebra removed and some of his skull to create more space to allow his fluid to reduce on his spine.  But this amazing individual was out of hospital within a week after such an intense surgery and back centre  stage at school doing his Christmas performance 2 weeks after. Incredible! He doesn’t let anything stop him. Sadly December 2020 we found out the fluid on his spine had grown significantly, at a level it could start damaging him so surgery was needed quickly. Jan this year we went back in for chiari decompression surgery, again one week later he was out, he’s so strong. He then became poorly at home so we went back in a week later and had lots of test done. So much going on for him but yet if you have had the pleasure of meeting him you just wouldn’t guess what he’s been through the countless blood test and the countless scans. 

He is incredible. I have never met another person like him! Since the age of two his dream has been to become a chef and in his words “cook for a 100 people and make them happy”. He has now already picked his business name and last Christmas asked for business cards and a sign for his restaurant. Now he has decided he wants  to be just like Marcus Rashford too. Not a doubt in my mind his dreams will come true and become what ever he wants in life. He will face any obstacle or challenge head on but he has the strength and the love to not let it damper his spirits. We are just so immensely proud of who he is and how is copes with it all. 

Olly is so excited for this challenge and to raise money for the hospital. He thinks they are all amazing and always thanks every nurse and doctor after everything they do even if it is needles and cannulas, which he hates.  His response to his auntie Dee Dee doing this was “why is she doing it for me I’ve not done anything”. Sums him up, he genuinely doesn’t even see how amazing he is!!!