Mum makes wishlist for all she wants her baby to achieve but has to make poignant new one after devastating diagnosis
Sara Gardner wrote down all the things she wanted her baby to achieve but after she was born with a terminal condition she penned a poignant new list
Like many first-time mums to be Sara Gardner was filled with hopes and dreams for her unborn daughter.
And she even went so far as to write down a list of goals and accomplishments she wishes would achieve.
But after her baby was born with a rare terminal genetic disorder affecting just an estimated 800 worldwide – she penned a new poignant list for little Clara.
Instead of learning to play instruments, ride a horse and attend dance classes, Sara hoped her daughter would be able to experience much simpler pleasures like touching her toes, drawing a picture, and dancing.
Now she’s released the poignant wish list of love which gave her a new sense of hope to raise awareness of her two-year-old daughter’s condition Smith-Lemli-Opitz syndrome.
Sara says: “Writing it down helped me focus on what she could still achieve rather than what she couldn’t. It gave me a new sense of determination to help my daughter reach these goals.
“She is a beautiful, amazing little girl and she has taught us so much in her short life about what really matters.
“I hope sharing our two very different wish lists helps remind other people what’s important too.
“Yes it would have been lovely for Clara to ride a horse, but seeing her face when we dipped her toes in the sea was magical and when the sun shines on her face and her eyes flicker with joy I feel like the proudest mother on earth.
“She will never have a career or learn ballet but none of that matters anymore and Clara has taught me that it never really did. What she has achieved makes us proud every moment of every day.”
Sara, 38, a former sales manager from Chorley, Lancashire, fell pregnant by partner Chris Walsh, 29, a gas engineer in 2014.
It all went smoothly and as her due date approached Sara sat down to write a list of things she needed to do before the baby was born.
But her mind wandered and she fund herself scribbling the hopes and dreams she had for her unborn baby.
They had chosen not to find out the sex of their baby but Sara had a strong sense she was carrying a girl and the list was crammed with things like dance lessons, playing instruments, travelling the world, getting a top job and earning lots of money.’
She says: “I vowed to do all I could to encourage my child to achieve everything they wanted to, just like any parent would.”
But after looking at her pregnancy scans doctors warned Sara the baby wasn’t growing fast enough may have to be delivered early. At 34 weeks Sara was taken in for a C section.
Baby Clara was born in November 2014 weighing 4lb 7oz with a cleft palate and webbed toes, but seemingly in good health.
Sara says: “We weren’t concerned, to us she was perfect and we felt nothing but love and pride.”
After a short stay in NICU Clara was allowed home but feeding problems meant she dropped below her birth weight.
Sara says: “It was very hard watching her struggle rather than flourish. But nobody really knew why she was failing to gain weight and we were very concerned.”
In May 2015 at six months old and still only 6lbs Clara was admitted to Alder Hey hospital, in Liverpool, for surgery to fit a feeding peg in her stomach in the hope she would gain more weight.
But routine tests revealed problems with her liver and investigations began to determined the cause.
It was a nurse on the ward who correctly identified Clara had the very rare condition Smith-Lemli-Opitz syndrome.
Sara says: “She had looked after a baby with the condition many years earlier and said that Clara reminded her of him. But she asked us not to look it up on the internet until consultants had looked into it.”
Five weeks later it was confirmed by a consultant Clara was one of only 30 in the UK and 800 worldwide to have the syndrome.
Sara says: “We listened in shocked silence as we were told she would have severe learning difficulties and would not walk or talk.
“We were told that those at the more severe end of the spectrum like Clara rarely live past childhood.”
The consultant explained Clara’s condition was inherited from her parents – who had no idea they were both carriers.
Sara says: “They were shocked that she had developed as well as she had.”
After a tearful evening, the following morning the couple woke with new determination to help their daughter.
Sara says: “Knowing we could have lost her at any moment and still could made us realise how precious every minute we had with her was.”
She had planned to return to work after maternity leave but instead decided to give up her job. While her husband worked to support them, Sara would focus on looking after Clara.
Because the condition is so rare, Sara turned to Facebook to connect with parents of other sufferers and their families worldwide.
The close knit community refer to their children as ‘siblings’ because they are so similar in terms of appearance and ability.
Sara says: “They are like family. And reading about their children made me questions the consultants bleak prognosis for Clara.”
Doctors had told her that Clara would never be able to move or express herself but at eight months she was already smiling and giggling when tickled, so her development left them shocked.
With renewed hope Sara sat down and wrote a new list to replace the one she had penned when pregnant. Now she dreams Clara will one day crawl, touch her toes, paint and even say ‘mummy’ and ‘daddy’.
Sara says: “Writing it down helped me see things in a more positive way and I wanted to
dedicate myself to helping Clara meet all these goals.
“They might seem little things to others, but actually they were far more important than the things I had written in my first list.
“She is a happy joyful little girl who smiles and communicates with us in her own way.
“Ticking off the things on the wish list has been the most rewarding experience. Clara has recently started touching her toes and can say ‘mum’ which is the best feeling in the world.”
The couple say that though they have no idea what the future holds, they do know for sure that while Clara night never have a career or earn lots of money she is an amazing little girl who has already taught her mummy and daddy what really matters in life.
Sara’s original list
- Dance classes like ballet
- Horse riding
- To travel the world
- To have a fantastic job she loved
- Earn lots of money so can be independent
- Get her own place
- Love music
- Never rely on a man to get the things she wants or need
- Play an instrument
- Make up her own mind about religions
- The new list
- Enjoy dancing by rocking back and forth with her favourite songs
- feel the grass on her feet
- touch her toes
- sun on her face (but cannot for long as burns very quickly due to cholesterol issue )
- Pick things up with both hands
- One day to be able to crawl or walk
- One day to talk even just to say a few words or even communicate in anyway
- We would love to hear her say mummy or daddy
- One day to brush her own hair hold the brush
- One day to hold a toothbrush
- One day to be well enough to see the world with us
- On day to eat something any thing to see her face dirty with food
- To one day draw or paint a picture
- Sara and Chris are raising money to take Clara for medical trials in the US.
To make a donation visit justgiving.com/crowdfunding/clare-walsh2 <https://www.justgiving.com/crowdfunding/clara-walsh2>