Cheeky Charlie!

I’d like to introduce you all to my six year old great nephew Charlie! We call him “Cheeky Charlie” because he has a cheeky, but very sweet nature. He’s described as an absolute delight with a great sense of humour for such a young lad. Charlie is a gift to us all.

Charlie was born on 27 July 2017 and shortly after diagnosed with a rare birthing defect called VACTERL Association. VACTERL affects one in 10,000 – 40,000 births according to literature published.

A baby can be born with one or more of the defects described below, however, Charlie has all seven. During my niece’s pregnancy, she was told that the baby only had one leg and one kidney so we knew there were complications. My niece was so brave and continued with the pregnancy and vowed that she’d love her baby no matter what. He’d be perfect the way he was. And she was right. Charlie melts the heart of everyone he meets, he’s got such a friendly and loving energy about him, always joyful and smiling, up for fun, play and jokes. He's got a great sense of humour and is a charmer too! Less than 24 hours after his recent amputation surgery, he’s cracking jokes to the nurse asking her to help him find his leg that he'd lost! Absolute joker!

In Charlies 6 years on this earth, I’ve lost track of the number of operations he’s had, urgent blue light ambulance trips to various hospitals, ambulance transfers to children’s hospitals in London, being placed on life support and even chances of him passing over. He’s come through it all and he’s still the happiest and most well behaved 6 year old I know. Nothing phases Charlie, he’ll give anything a go. None of his complex needs have stopped him doing anything he wants to do. He just gets on with it and doesn’t treat any of his disabilities with negativity. He’s a special one and a very unique soul.

Taking into consideration everything Charlie’s been through so far in his life, we thought he deserved his dream holiday to Disneyland and wanted to ask for any support you might be able to offer with helping us as a family to make Charlie’s dream come true. He really does deserve this because I’ve barely scratched the surface in telling his life story, as I’m sure you can imagine.

A bit more about VACTERL and how it affects Charlie….

VACTERL Association is a non-random association of birth defects that affects multiple anatomical structures. The term VACTERL is an acronym with each letter representing the first letter of one of the more common findings seen in affected children:

Vertebral defects: These affect between 60 and 80% of babies born with VACTERL association to varying degrees. The vertebrae (bones that make up the spine) may be misshapen or fused or missing or there may be additional vertebrae in place. Charlie has nodules missing in his spine. This causes him no pain and is not disruptive to his life.

Anorectal anomalies: This means that the anus has not formed properly and may be either closed over or very narrow so faeces cannot be passed from the body in the usual way. This affects between 60 and 90% of babies born with VACTERL association.

Charlie’s anus is closed over so he has had a stoma from birth.

Cardiac defects: Between 40 and 80% of babies with VACTERL association will have a cardiac or heart defect, although the severity of the defect varies from child to child. Charlies heart is on the right but it functions perfectly well.

Tracheo-oesophageal fistula (TOF)/oesophageal atresia: These affect between 50 and 80% of babies born with VACTERL association. Tracheooesophageal fistula (TOF) is where part of the oesophagus is joined to the trachea (windpipe). Oesophageal atresia (OA) is where a short section at the top of the oesophagus (gullet or foodpipe) has not formed properly so is not connected to the stomach. This means food cannot pass from the throat to the stomach.

Charlie is what is known as a TOF baby and has all that is described above. Whilst growing up, Charlie had to have his windpipe stretched on many occasions and choked when eating many times too. As he’s got older and his windpipe stronger, his risk of choking has reduced drastically and he no longer needs the windpipe stretch operation.

Renal abnormalities: These abnormalities can vary in severity and may include an absent kidney or kidneys that are formed abnormally such as a horseshoe kidney or cystic kidneys. Around 50 to 80% of babies born with VACTERL association have some form of kidney problem.

Charlie has a misplaced kidney in his pelvis, however it functions normally. Charlie has had a catheter bag since he was born. More recently the reversal process started and Charlie had a “button” installed to allow for the bag to be taken off from time to time. This has helped Charlie learn how to go to the toilet independently. The reversal process is well underway and Charlie has learned how to go to the toilet like any other boy.

Limb abnormalities: This affects around 50% of babies born with VACTERL association. It is often the thumb or the forearm and hand that are affected, which are missing or underdeveloped.

Charlie has had a deformed leg since birth. It’s called his “little leg”! Charlie doesn’t have a hip joint on that side so his little leg dangles. Charlie has recently started the process of having a prosthetic leg. The first part of the process was to have the foot of his little leg amputated to create a stub and allow for the prosthetic leg to attach easily.

As well as being hyper mobile, on one of Charlies’ hands he doesn’t have a thumb but on the other hand he has a thumb that doesn’t have a bone so he’s never been able to use it. Charlie has adapted to not having any thumbs very naturally and has always used his index finger as a thumb and middle finger as an index finger. Life is about to change as the recent surgery mentioned above on Charlies little leg, involved a procedure to remove the bone from the toe on Charlie’s little leg and placing it in Charlies thumb that doesn’t have a bone.

Single Umbilical Artery: A typical umbilical cord has two arteries and one vein. A single umbilical artery (SUA) is an umbilical cord that has only one artery instead of the normal two. This condition is sometimes known as a two-vessel umbilical cord.

The vein carries oxygenated blood from the placenta to the growing baby, while the arteries carry deoxygenated blood and the waste products from the baby to the placenta.

So that’s our Charlie! Adorable, loveable, cheeky Charlie.

It's Charlie's dream to go to Disneyland with his mum, stepdad and baby brother Brodie and this is where we need support. He deserves to live his dream and more. It'll be a time of creating memories he will hold on to for the rest of his life. If you can help create this for him our gratitude to you will be lifelong and endless.

Thanks for taking the time to get to know our special soul Charlie, even though a few paragraphs doesn’t tell you much, I hope you warmed to him.

Thank you in advance for any donation you are able to offer to contribute towards making Charlies dream a reality. We are all very grateful to each and every one of you and thank you from the heart. Bless you all!

From Charlie’s Nan (my sister):

I never imagined or expected my life to change so dramatically when Charlie was born. All my worries and concerns just disappeared. It was instant love.

When I say I cannot put into words into words how I feel about this boy is the truth. From the moment he was born he was whisked away for surgery which he recovered from so well. Charlie spent is first three months of life in hospital whilst his little body recovered from two major surgeries where he had a repair for toffs and a stoma was made.

Charlie and his mummy, Katie lived with me for the first couple of years so I witnessed a lot. When Charlie got unwell, he got extremely unwell to the point where sometimes he was intubated and blue lighted to the Evalina Children hospital in London. The fear and terror was agonising. I never want to feel or see that again. Tape across his eyes and a huge breathing tube down his throat was heartbreaking and an image that never leaves me. Unfortunately this has happened a few times; it never gets any easier and the anxiety is unbearable but this boy pushes through and recovers every time, so who am I to moan! Charlie is my super hero, he really is.

Charlie is 6 now and lights up every room he enters yet he’s been through more in his short little life than some do in a 90 year lifetime. His smile does it for me every time and his zest and attitude for life beats anything. Charlie still has some planned surgeries ahead of him but he enjoys every day of his life.

I won’t lie it’s been really tough emotionally and physically being Charlie’s Nanny. The tears I’ve cried and worry I’ve felt has been mind blowing, but I love him so much and the love he gives me means everything and his cuddles are something else. He’s so loving and affectionate.

Please don’t feel sorry for Charlie as he is who is. Thank you all for your support and for taking the time to read our story.

Love Sherry - Proud Nanny to Charlie xx