Usually, we’d tell you a little about Maddy, but, Maddy’s mum has written such a beautiful letter and we’d like to share that with you instead…
“Some of you may remember our beautiful and happy little girl Madison Rose. For those of you who don’t know, Madison was born on the 2nd of June 2005, a healthy gorgeous little girl who was loved, wanted and cherished dearly by us all.
She was (and still is) the apple of her daddy’s eye, adored and spoilt by her big brother Josh, and the perfect little girl I had always wished for; she has truly made our family complete. She is our ‘little ray of sunshine’.
Madison began developing normally; learning to talk, (her first words were dad -dad –dad, of course!), using her hands to feed herself, picking up toys and playing with things. It was not until her first birthday that we realized something was not right.
At the age of 19 months we had our first visit to the Royal Children’s Hospital and it was there that we received the life changing news of her diagnosis. ’Madison has Rett Syndrome; the condition is regressive, incurable and untreatable.’
We were given no definite life expectancy for her other than maybe 10 -12 years of age, and with that we were told to just enjoy each day that we have with her. Never in our wildest dreams did we ever think that she would be diagnosed with such a devastating condition; not our little girl.
Needless to say our whole world was turned upside down, our ‘normal‘ life turned instantly into a world of unknowns and devastation. Rett Syndrome has left Madison without the ability to speak, although she expresses herself so eloquently with her eyes.
She has no purposeful use of her hands or arms; she cannot walk, sit, nor stand independently and is reliant on her wheelchair for all of her mobility inside and outside the house.
Because of the severity of her condition Maddy requires 24/7 care. I am her main caregiver as my husband has to work fulltime but when he gets home from work he loves to take over and care for his little girl, as this is his special time with her and it also gives me a bit of a break.
Maddy suffers from many other medical conditions connected to having Rett Syndrome. She has epilepsy and is now medicated 3 times a day for uncontrolled seizures; she also has the onset of scoliosis (curvature of the spine), and respiratory complications. Madison suffers from breathing abnormalities as her condition causes her to hyperventilate and at times hold her breath. The Rett syndrome has caused her muscles to weaken and has also deteriorated her bone strength.
This condition has had a profound impact on Madison’s ability to eat and digest her food. Even though feeding her a meal can usually take about an hour, Maddy is lucky enough to still be able to enjoy the tastes and textures of her food; and she also loves being part of the family meal time. But, as her condition is regressive, Madison will one day have to be fed through a PEG tube in her stomach.
Because Maddy’s body has to work so hard just to do the little things we take for granted, her immune system is very low so winter time is always a worrying time for us. With the respiratory problems she has, a chesty cough or infection can, and usually does mean a stay in hospital.
But none of this has kept Maddy from going to a mainstream kinder and having fun with her friends and being loved by all who meet her. Next year Madison will go off to school, and it is there that she will need to have her wheelchair with her all the time. Maddy’s wheelchair is collapsible as we do not have our car modified yet. She weights 18kg and her wheelchair even when collapsed weighs 28kgs; lifting both her and the chair in and out of the car all of the time has been extremely hard on my back and I am getting to a point where I am unable to go anywhere with Madison by myself as I have difficulty with the transition of both Maddy and the chair.
But most importantly Madison needs to be seated safely and comfortably when travelling by car. The car seat she is using, although appropriate for her age, it is neither supportive enough for her back and neck, nor comfortable enough for her with her condition especially on long trips.
Surviving on a single income, my husband and I have begged and borrowed to obtain the $33,000 needed to purchase the right type of car for the wheelchair conversion; and now we feel devastated that we are struggling to acquire the rest of the funds to modify the vehicle. This modification is going to cost us approximately $32,000 all up, excluding the cost of transporting the car interstate and the hire of a car for 6 weeks whilst ours is in being converted.
As parents we feel devastated that this financial burden is having such a profound impact on Madison as we don’t want to have her miss out on anything in her short, but very special life.
My husband and I don’t want to have any regrets or ‘what if’s’, but my ability to be able to physically cope with the constant lifting of both Madison and her chair are impacting on our day to day living and I would always regret not being able to provide a full and happy life for Madison if I was not able to get her out to see and experience the world outside her own home.
Traci and Adrian; Madison’s very proud parents”
The cost of the vehicle conversion is $31,368.73 There is a $10,000 grant available to the family via the Victorian Government’s SWEP program, which they have applied for. They have also applied to the Shane Warne Necessitous Fund for assistance. This appeal seeks to raise $5,000 toward the cost of the vehicle conversion. And if we can raise more we will.
If you’d like to help Maddy get back on the road safely you can do so by visiting her appeal page. Thank you for your support.
Australian children’s charity I Give A Buck Foundation of Australia Ltd assists children from disadvantaged families who also suffer from a life-threatening or life-altering illness or condition – with particular focus on terminally ill children.