A Shropshire mum has published her first book to raise awareness of Down Syndrome and show the journey through the eyes of a sibling after her three-year-old son was born with the genetic condition.
Katie-Lou Mackenzie, from Lawley, Telford, has written and published her book “The World in Full Colour” – whilst also telling her story of her journey as part of the book launch – in a bid to support others who might be earlier on in their journey.
Katie-Lou chose to write the book through the eyes of a sibling of a child with Down Syndrome as she felt siblings could often be overlooked but yet they are the ones who ground you and show you how amazing all children are.
Katie-Lou and her husband James were delighted when they conceived their second baby – a sibling for their now seven-year-old son, Jack, who is the inspiration behind the book.
The couple had all of the tests offered and all risk of Down Syndrome was low and no problems were detected on any scans.
However within a matter of hours of beautiful baby Alfie being born, they received some unexpected news. Katie-Lou – who was alone at the hospital at the time and had only had a couple of hours sleep – was told their son probably had the condition Down Syndrome.
“We had the tests whilst I was pregnant and there were no concerns. The only thing they said was that the baby’s legs were measuring short but no-one said what that could mean.
“The specialist checked everything as babies with Down Syndrome usually have signs that indicate towards Down Syndrome such as an extra roll at the back of their neck or heart conditions and he didn’t have that but they never mentioned the words Down Syndrome and we didn’t know anything about it.
“They just said he was never going to be a basketball player but he’s absolutely fine. They asked how tall our family members were and we all said the baby just had short legs like the rest of the family!
“Then he was born and he was rushed off with severe jaundice on blue lights. Nobody said anything and jaundice is quite common so again we had nothing to be concerned about.
“Alfie was born just before 6pm and James went home as visiting was over and I stayed up with Alfie. I had just gone to sleep and then at 3am I was woken up and asked to sign something in relation to Alfie. They said they needed to do an emergency blood exchange – take bad blood out and put good blood in.
“I remember asking if he was going to be alright and they just said it was very important they did the blood exchange immediately.
“I asked, ‘Is it because of the jaundice?’ and the staff replied ‘No it is because of Trisomy 21’. I remember saying I didn’t know what that was and had never heard of it and they said ‘it’s the medical term for Down Syndrome’ and that’s how I found out – alone, emotional and sleep deprived.
“I was taking it all in with just a few hours sleep and then I was told to go back downstairs – it was awful. Alfie had the tests done and the results took five days to come back to confirm.
“The results came back the day before we brought him home. He was tube fed for five days in hospital and he came out on a bottle and they said he probably wouldn’t do that and might have problems eating – he was proving everyone wrong at five days old – anyone who knows Alfie knows he loves cakes and biscuits and knows how to ask for them too!”
Katie-Lou opens her heart in this book launch interview and wants to be honest so other parents going through such times know they are not alone and their emotions are normal.
“I cried permanently and I did for six months after too. I loved him from the day I saw him – he looked no different to Jack as a new born baby but every time someone got married or had a baby I couldn’t help but think ‘Alfie isn’t ever going to do that’.
“I love my job and I thought I was going to have to give that up to be his full-time carer, move house for specialist care and equipment and I feared I had ruined Jack’s life because he had become a carer overnight. We as parents had to learn how to care for Alfie overnight – he fed differently, he needed holding differently and we didn’t know what to do and when.
“You’re grieving for the child you thought you were going to have – like all new parents I had gone through so many milestones in my head for Alfie, I had planned his entire life in the nine months I was carrying him. But why should you put your dreams on your child? Just because you have a daughter doesn’t mean you are going to be a mother of the bride,” the 34-year-old engineer said.
“In your head you plan your child’s life before they are even born but of course you don’t know it’s going to happen like that.
“My opinion of Down Syndrome was really old fashioned. I didn’t really know anyone and I had only seen really old photos from years ago but I started reading other mum’s blogs and stories which helped me immensely. It was a rollercoaster of emotions and mental and physical challenges too.”
Katie-Lou said the support from their two families had been overwhelming, along with the community including Jack’s football team members who have learned Makaton so they can communicate with Alfie and Jack’s school Lightmoor Primary School and Alfie’s nursery ABC Lightmoor have both introduced Makaton into their learning and play too.
Alfie has also become the first Official Mascot for Shifnal Town Football Club, helping spread his smile and inclusion in sports.
“I will never forget when Jack was talking about superheroes and I said they don’t all wear capes or fly and Jack said ‘I know – they might have Down Syndrome.’ and it made me realise what an incredible bond they have as brothers and how Jack sees Alf.
“It is scary having a child with a genetic condition like Down Syndrome but I wish everybody could look at the world as positively as Alfie.
“Alfie has all of the different emotions just like we do and he is so stubborn! He has a beautiful smile and has developed so much, he is starting to walk and certainly knows how to tell us what he wants now using Makaton sign language,” she said, as Alfie beams from his high chair whilst signing for more cake!
Katie-Lou says a shopping trip can be lengthy as Alfie wins the hearts of everyone he meets and urges people not to be afraid of offending and ask questions so the knowledge of Down Syndrome can be shared.
“We say if we come out of the supermarket without making 10 new friends then we’ve had a bad trip!”
Katie-Lou also runs a Facebook page called “Nothing Down Here But Love” which shows Alfie’s journey and the blonde haired, blue eyed toddler has just won a modelling contract too!
“The Facebook page came after Alfie’s speech therapist was asking about the different things he does at home so I started doing videos and it went from there – I love it!
“If someone who has found out their unborn baby or newborn baby has Down Syndrome and sees what Alfie can do and how happy he is then it might give them comfort.
“It also shows other children how amazing he is too. We have just found out he has a modelling contract with a London agency so hopefully he will be modelling for some high street brands soon!
“It is great that the media’s perceptions of disabilities have changed over the years and the talents and abilities of all youngsters and adults are starting to be recognised.
“We want Alfie to show the world exactly what he can do – we say he will change the world. We want him to be able to live independently in the future and get a job but health and happiness are the most important things.”
Katie-Lou is already helping to spread the message to employers through the Down’s Syndrome Association Work Fit employment programme and the family have also had pin badges designed and made with “What’s Your Super Power? Trisomy 21” on to raise awareness of Trisomy 21 and raise funds for Down Syndrome charities.
“The World of Full Colour” is a light hearted, positive story, that takes the reader on a journey, demonstrating that ‘perfection’ can be what we want it to be if we open our eyes.
The story is full of achievements, love, inclusion and different perspectives of the world, where a cheeky, stubborn little boy called George and his brother James achieve their big dreams with the help of a little bit of magic from their eccentric Great-grandad.
Proudly showing off the front cover of her first book “The World in Full Colour” which was designed using Alfie and Jack’s artwork, Katie-Lou said: “I had the idea of writing a book whilst coming back off holiday and then I just kept developing it in my head and didn’t tell anyone – I thought JK Rowling wrote books not me!
“Alf gets up early so I was up too and I wrote the first chapter and I thought if it didn’t happen or I finished it but it didn’t go anywhere then at least it was a kind of therapy for me and was helping me deal with my emotions.
“I found lots of blogs, factual adult books and picture books but most were in other countries or something I didn’t want to read and nothing from people in the UK and nothing that was through the eyes of siblings or aimed at young adults.
“I wanted something light-hearted and included elements similar to what I was thinking – I started, I got excited and I kept going until I had finished.”
Eventually Katie-Lou told her parents about her book and she sent it to them to read and of course they loved it! But Katie-Lou knew how much they loved her and Alfie and Jack and wanted another opinion, which is when her friend’s aunty then read it and four chapters in she said she was “welling up.”
The book is based on Jack and Alfie but uses their middle names and becomes a fiction book as it goes beyond the ages of Katie-Lou and James’ two children. The character, great-grandad Frank, is named after Kate’s grandad.
The book, designed and published by Paul Naylor at Media & You and printed by WPG in Welshpool, is on sale from 25 July and Katie-Lou and Alfie are taking bookings for book signings at events and at book stores across the county.
To arrange a book signing, if you would like to stock the book or order a copy of the book which goes on sale on July 25th visit Amazon.