Andrea Foo, mum of three young children, tells us her families story – powerful, thought invoking and I’m sure you will all agree that the help from a charity can make the world of difference to many lives…
“We have three amazingly brave and courageous children. Ethan is now 10 and has Congenital Neuro Myopathy, Glomerulonephritis and Ehlers-Damlos Syndrome type 3/4. Brooke is 7 and has Ehlers-Danlos Syndrome type 3/4; And Faith – is 4 and has left-sided Hemihypertrophy.
One of the worst days of my life was when the genetics team diagnosed all three children and explained what the future held for us all as a family…….how devastatingly painful Ehlers-Danlos syndrome was and how Faith’s chances of getting childhood cancer were 600 times more likely than a child without Hemihypertrophy. They detailed how all three children would endure rounds of blood tests, physiotherapy, ultrasound scans, orthopaedic and orthotic appointments, O.T appointments, podiatry, appliances and wheelchair services, along with multiple routine hospital appointments and multiple hospital admissions.
The following day, Nick (my partner and father to all three children) had a hospital appointment as he had eye problems due to being a Type 1 Diabetic ……..I was in a daze that day anyway, but when he walked out of the consulting room and explained “there was nothing more could be done”. He passed me a small piece of paper. It was a CVI (certificate of vision impairment) which stated that he had stage 4 proliferative diabetic retinopathy and had just been registered blind.
We both had full time jobs, a pony and a mortgage to pay for. We had fancy cars – a BMW, EVO and an Audi, to name a few……From an outsider looking in, we had it all. We had everything, and yet in 48 hours our lives were changed FOREVER.
Things are very different now. There is no more fancy cars. No more designer clothes. No more make-up, hairdressing, manicures. No more holidays, or meals out……. But one thing is sure – this life has taught me that materialistic things no longer matter. From the bottom of my heart – they just no longer matter……I used to think I felt pride when a new car was delivered, when we moved home, when we committed to our next holiday…….My god that wasn’t pride. Pride is watching your 9 year old son stand up for the first time in 2 years despite agonising pain. Pride is watching your 6 year old daughter who has been vomiting and bleeding all night walk in to school in agony and pretend to be “normal”………….and pride is when your 3 year old little girl says thank you to the sonographer for telling her mum she doesn’t have cancer this time round.
However our lives are not filled with sadness or despair. We take the rough with the smooth and the good days are soooooo good…….Ethan can now drive his pony from his wheelchair thanks to Dreams Come True for providing the Ibex. Brooke can ride a pony even if she cannot walk that day; and Faith doesn’t have a limp, due to her leg length discrepancy, when riding….so yes we keep the pony!!!
Pride is when your child has a dislocated knee, an arm broken in 2 places, a ruptured spleen, chronic kidney disease or a dislocated hip and is still polite to the medical staff. Pride is when your daughter stays still for the facial surgeons to put her face back together when she will be scared for life. Where she is left conscious to have her fingertip reattached to her finger on three separate occasions due to the risk of GA. And pride is when your 4 year old daughter gives her hand to the phlebotomists and says “please try and make it hurt a bit less than last time”, when she can no longer walk due to pain from her misaligned pelvis. Or when she sees her mother crying in the kitchen at night and tells me to “stop being sad, that none of this is my fault”.
So I as a mum to these 3 children feel nothing but immense pride…..I set a Facebook page up called Born Broken From The Start in the hope of helping other families in situations like ours. This shows you what these conditions have done to our children. However, it also shows you how happy they are and that life does go on.”
To find out more about Dreams Come True, an amazing charity whose aim is ‘bringing joy to terminally and seriously ill children’ click here.
For more information about how Mojomums may be able to help you raise awareness for your chosen charity click here.