Butterflies For Khloe
We will be having fundraising events (Butterflies For Khloe) but we are hoping by having a Go Fund Me page for Khloe and her family we can take off the burden of financial strain and they can be with their daughter & not worry about paying bills at home and for her ongoing care.
I had the pleasure of meeting this family back in the spring of 2015 as I did family photos for them. (I'm a photographer and now the spokesperson for this family and they could really use your help) I was instantly drawn to these people and quickly noticed they weren't just people behind the lens but a family that had a bond far beyond what I had ever seen. This is when I first met little Khloe, she was always smiling, content and happy and a perfectly "healthy baby" . The one thing I did take notice to instantly is when her mama put her down to get her photos taken she wasn't a baby I had to chase back and fourth and run after. This had been brought up by Khloe's parents at a number of doctors appointments and they were always told she's healthy, thriving, and a little bit of a pork chop with those big Gerber Baby cheeks and thighs to match. Drs. said she was a late crawler so perhaps she will be a late walker but other then that there was nothing to worry about! This went on for awhile the back and fourth with Drs., and in the mean time I met them again in early winter for a 2nd photo shoot. Again Khloe was not walking and now no longer even supporting herself in the standing position. Finally she was sent to a Pediatrician at the hospital in her home town of Peterborough Ontario Canada.
On December 24th 2015 Khloe's nervous parents sat in the hospital for hours while the Pedeatrician assessed Khloe and completed test after test. He then delivered the news no parent ever wants to hear. There is something seriously wrong with your baby, he was very concerned and said go home and have Christmas but Boxing Day you are to go to Sick Children's Hospital this is "Serious". Nothing any parent would ever want to hear let alone the day before Christmas.
So began Khloe's journey to Sick Kids Hospital in Toronto: Boxing Day 2015 Khloe was transferred to sick kids hospital for an urgent MRI to determine why she couldn't use her legs. After hours in the emergency department, doctors decided it would be best to admit Khloe and monitor her ongoing before her MRI. Preceeding her MRI, she had to have blood work. Being a baby, her veins were so hard to find after 3 attempts they decided to wait for the specialist team to conclude the blood work tests. Khloe had a specialist team come and start an IV on her. Khloe was put under anaesthetic and underwent an MRI on her spine and brain. December 27th we learned Khloe has what's called an "Arachnoid cyst". An Arachnoid cysts that developed in her spinal canal. This cyst is stretching 7 vertebra (T2-T9) in the middle of her back. The cyst is putting pressure on her spinal cord blocking the messages from her brain to her legs, making Khloe unable to use her legs. Khloes case is very "RARE" . Arachnoid cysts are hardly ever found in spinal canals. Neurologists and neurosurgeons met to determine what the best plan was. Back and forth to sick kids Khloe has had to have genetic DNA testing, never ending blood work, a EMG test (electromyography)- which is a way to test how her muscles and nerves are working together. Needles were placed into Khloe's muscles determining what muscles in her legs were functioning properly. She also had to undergo a nerve conduction study, this shows how well electrical impulses travel through the nerves of the body. Electric shocks were transferred through two pieces of tape attached to Khloe on different parts of her legs. Khloe has muscle wasting, and it was clear that messages aren't getting to her legs.
As Khloe is quickly beginning to lose any type of independent mobility, neurosurgeons have decided Khloe needs spinal surgery. Khloe's surgery is February 2.
Sadly on January 26th 2016, Khloe's surgery was cancelled and we found out the devastating news that she tested positive for SMA (Spinal Muscular Atrophy) and was unable to have this surgery. This was a huge set back and Khloe will need ongoing care with hopes of finding her the treatment she will need. Currently there is NO CURE for SMA and this disease can and has been fatal in babies and children. I will continue to keep this GFM page running, aqlong with all other fundraising events with hopes that we find a cure for Khloe and all the other now much needed support this family will greatly need . (Sorry for the late update to this area of the page) although the public has been kept up to date on Khloe's Facebook page which you can find here.
Thank-you to everyone for their incredible support, we are so grateful to every single person that donated and continue to support and donate to Khloe (Feb 15, 2016)
We reached our Goal of 15 000.00 you are all a Blessing!
Our goal is to raise as much as possible, to help Khloe and her family during this critical time. Thank-you Matt, Jess, Khloe
c/o Sheri Reed
Also very important a "TRUST ACCOUNT" has been set up in the name of Khloe A. Madgett and her daddy's name Matthew Madgett at the TD Canada Trust so at anytime you can go to any TD Canada Trust and make a donation this way also !!
Yesterday they made another trip to Sick Kids Toronto,
Sadly they received the worst news Khloes surgery has been cancelled
and after talking with a team of Specialist, Drs. and family counselors, they
were given the devastating news that their daughter Khloe tested positive for
SMA ~ Spinal Muscular Atrophy ~ There is no Cure.
Khloe will face many obstacles and challenges and so will her wonderful parents.
They are completely heart broken hearing this very sad news.
Please continue to support this family they will now need to spend every second with
their precious baby and need your support more then ever.
c/o : Sheri Reed
Much Love to you ALL for your generosity !
Thank you Sheri for setting this up, I'm Khloe's aunt and since finding this have regularly checked in with it. My family and I appreciate all of the support from everyone. I don't live in town so it's hard to have my sister go through this without physically being there.
Thanks for the update, Sheri. very sorry to hear this news because they are such a wonderful family. We've sent a cheque because I think 'fundme' keeps a small percentage of the money. It's good that they've set up the trust account too. Thanks for organizing all this - the family has enough to deal with and it's wonderful that you are such a huge support. kathy & harry