Day 730: Feeding Cookie Monster!

www.gofundme.com/madimovesahead
Mommy was busy running around this morning as usual, and when waiting in the car for an appointment to start – this article popped up in an email.

Thank you Branksome Hall for all your love and support!

http://www.branksome.on.ca/News/Pages/Article.aspx?ArticleID=450
Jack was back at the doctors again for his one year shots…and to get more meds for his never ending cough and cold.


Jack and Mommy picked up Madi from school and then headed to speech! Madi learned new floor exercises to help open up her rib cage and lungs for deep breathing and projection of voice. We already see a difference in her volume and tone. 


She was also taught a sequence is quue’s today to help with the clarity and length of sound when sitting. She was very receptive to trying the strategies and sub vocalized them every time which was awesome to see! “Hands on my knees, sit up tall, big breath in and GO!”


Day 729: Reflections

This past week was very sereal and almost dream like. Never in a million years did we picture this last week unrolling like it did. We had massive media support to push our fundraising in an unbelievable direction and most of that was due to Mike Wilson “The Ultimate Leafs Fan”, his wife Debra and all of you that read our blog, shared our story and cheered on Madi each and every day. Thank you to our family who hustle hard and support us to the end. Other developments in the week were: phone call from OHIP to look at our file, appointment put back forward for McMaster and we have our date!!! Madi will meet Dr Park May 1st and surgery May 2nd!! 

With everything going on, Madi was focused on more important things today…preparing all her valentines for all her friends at school and being silly with Nate and Jack.


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If you didn’t get a chance to check out Mike’s latest blog, here it is!

“​One Small Donation for Man, One Giant Leap for Madison
 ​​Deb and I are involved with a number of fundraising endeavors that we are extremely proud to be associated, but our latest initiative has risen to another level.  

​Madison Ambos, a 3-year girl was diagnosed at 13 months with Cerebral Palsy and for the past two years her parents have been researching therapies and treatments for CP. Their tireless efforts were finally rewarded a year ago when they discovered a surgical procedure called SDR that cuts nerves in the Spinal Column to relieve the spasticity that causes difficulty in balance and walking. This also doesn’t take into account the constant pain Madison incurs, likened to a nagging muscle cramp. Katherine (Madison’s Mom) can’t remember the last time Madison had a pain free night of sleep.

​The surgery once available in Toronto but no longer, is now performed by Dr. Park at Children’s Hospital in St. Louis. The great news is Madison has been accepted to have this operation in May of this year. The bad news is the price tag of $140,000 that is not covered by OHIP. Some of the costs can be absorbed by OHIP if a Canadian Surgeon will sign off on the operation but its not guaranteed. The family cannot afford to wait because another opportunity might not occur.

​ Through numerous small fundraisers, donations and a “GofundMe” page, the challenge to raise the massive sum has been on going. We have a family connection and have followed Madison’s progress since the devastating news was delivered.

What has amazed us following Madison’s progress is the positive spirit from the family. They have rallied in unison (32 family members attend meetings to discuss fundraising) and not once was any “self pity” or “why me” ever posted or even discussed. It’s all about overcoming the setback and nothing but positive energy. I’m sure there has been many tears shed and every time I see a photo of Madison with her walker, it wells me up.  

​On Feb 8, we held a fundraiser at our house, and with the driving force of the Gregoire family, friends and the media, it was a huge success. We didn’t want this to be a down evening but rather a celebration that Madison will receive the funding necessary too over come the challenge that lays in front of her. It was awesome!

The media exposure went viral and donations poured in from across the country and south of the border as well. Wednesday the “Gofundme” account was at $80,000; two days later sits north of $130,000.  

​ Madison’s story has attracted mass public appeal that has been overwhelming to say the least. A number of families in similar situations have reached out to Katherine (she knows of a dozen) and I received a note from friend of ours who knows a family that has been accepted for the operation in St Louis as well. They are financially challenged to meet the $140,000 but because of Madison’s family efforts, they are inspired to move forward. Katherine will give them some guidance.

​Sadly the fight is not over and a number of Canadian families need help with this dreaded setback. The fundraising is still open and we encourage people to push the number over the line. If the family exceeds the $140,000, they will pass any additional funds to another Canadian family in need of this procedure; the fight continues.

​Deb and I would like to thank everyone who has stepped up to assist in changing Madison’s life forever. Feel proud this little angel will be given a chance to experience something we all take for granted everyday of our lives; Walking!”

And finally…. Mark, Nadia and Nate officially launched our last fundraising endeavour…Madi’s Paddy Day Party!! 


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Day 727: Thank You Canada!

The last 48 hours have been magical. The power of media support to bring awareness and advocate for change has been overwhelming but awesome! Thank you to everyone who continues to share our story and cheer for Madison. Thank you to the media for believing in our family and our story and for helping give us a platform to spread awareness about the challenges other families like ours face in the province. We are so close to our goal and we feel very blessed to have everyone a part of this amazing journey.
Here are some pics from our crazy, but amazing day…

  • CFRB 1010 News radio interview
  • Canada Now on XM radio interview
  • CTV studio visit for news at noon
  • Spot on the CTV National News!
  • Lots of celebrity re-tweets 
  • Go Fund Me page trending internationally! 
  • A very happy little girl


Day 726: A Day of Blessings

Today was one of those days that will go down in the history books as being truly life changing for not only Madison but for the whole family. We feel we will need a few days to truly process everything that happened today….so many blessings…so much love!


http://www.cbc.ca/beta/news/canada/toronto/surgery-may-help-madison-walk-on-her-own-but-it-s-not-offered-in-toronto-1.3970586
Highlights from the day:

  • CBC News radio morning show featuring Madison at 6:30, 7:30 and 8:30
  • CBC News online article released
  • Multiple phone calls from lawyers, restaurants, donors from all around wanting to help
  • CBC news evening radio live interview
  • Fundraising event at the home of The Ultimate Leafs fan covered by CBC and CTV
  • Feature on CBC News at 6:00
  • Shout out from The Jays on Twitter!
  • 110 Go Fund Me Donations in 1 day for a total of $28,871.00 in 1 day!!!


We can’t even begin to express how grateful we are for everyone’s support. It’s been an incredible day! One we will continue to share stories about with Madison for years to come.

Tonight’s fundraiser and celebration was amazing! The house of the Ultimate Leafs Fan did not disappoint and all the big hockey fans were in true hockey heaven! A big thank you to Mike and Debra for hosting such a fantastic event that will help to change Madison’s life and get her to St Louis! Thank you to Madison’s Nana & Papa for organizing everything and to all her family and friends for attending. 



Day 725: CP Gear!

www.gofundme.com/madimovesaheadMadison loved her morning at school because a dentist visited to give a check up for each student because they are learning about dentists this week at school!
Jack had a visit with Eric to get his last helmet fitting. Only a few more months and his helmet should be done with.


Madison worked hard at March of Dimes this afternoon. Lots of walking and standing before making her way home in the freezing rain. 

Madison was thrilled to see some new CP items when she got home. Aunt Janine found some cool St Louis books and Pam’s daughter Nicole gave the kids some cool CP awareness shirts. Thanks everyone for the CP love!


Another little girl named Taylor is on the same journey towards SDR surgery as Madison. She has started her fundraising campaign and one of her initiatives is selling CP decals like this one that Mommy picked up today to support Taylor and her family. Check out her page to follow her journey:

https://www.facebook.com/groups/362985184083998/

CBC News Update! Madi’s story is being shared tomorrow! Check out the CBC web article being published as of 5am. CBC News Metro Morning radio show with Jill Dempsey at 6:30am, 7:30am & 8:30am and CBC 6:00pm News. A big thank you to reporter Shannon Martin for sharing Madison’s story!

Day 724: CBC Interview

www.gofundme.com/madimovesahead
Madison had an interview with CBC News this morning! She was thrilled to learn that she would be on tv this week. Madi and Jack did a great job playing and interacting with the team while Mommy & Daddy spoke about the families upcoming trip to St Louis. CBC was interested in learning about the fundraising event this Wednesday being hosted at the home of The Ultimate Leafs Fan to help Madison with her SDR surgery in May and to shine light on the current challenges families in Ontario face in advocating for SDR for their child. The unofficial broadcast time is this Wednesday at 6pm and the interview will also be on CBC News Radio and their website. We will update everyone tomorrow. We are so appreciative to CBC for sharing Madison’s story! Thank you!


Madison and Jack had a specialist appointment this afternoon with an ENT. Madison’s doctor and speech therapist suggested she have her throat looked at due to her challenges with volume and tone with her voice. Madison was a champ and let the doctor use a scope to look at her vocal cords with no issue. The doctor discovered that Madison’s vocal cords are swollen and it’s due to reflux. Madi had issues with reflux when she was a baby but has seemed fine and no issues since she was about 1. The doctor told us that most kids with heartburn/reflux never complain or know. Madi will try meds for the next month to see if her speech volume, tone or clarity changes and will go back and check in with the doctor. With all Jacks ear infections the ENT also examined him and he had a full hearing exam with the audiologist. His hearing was good and the excess fluid behind his ears should drain soon. 


Madi was back in the pool tonight with Ryan and Jess and worked on some floats on the tot dock!


Day 722: Jack is One!

www.gofundme.com/madimovesahead
One year ago, our family became complete. We can’t believe our baby is one today.

Madison was super excited that it was Jack’s birthday today.
She insisted on waking him up to sing happy birthday. She pushed open his door and yelled “Birthday boy wake up” and then started to sing – Jack smiled and laughed and thought his sister was so funny.


They had a quick breakfast and then headed to both of their gym classes. 

Madison wanted to help Jack open his presents as soon as they got home. She helped him rip off the paper and cheered him on.


Madi and Jack met up with Nate for a play, dinner and some yummy birthday cupcakes! Mommy was super happy to see that Madison could access part of the play place all by herself!


Once the birthday boy was in bed, Madi headed to a sleepover! All the “big girls” at DLDA – Madison’s dance studio held a sleepover fundraiser tonight to support Madison’s upcoming surgery. They were all in onesies and gave Madi big smiles and hugs when she arrived. Mommy and Madi thanked everyone and she gave them cupcakes to say a big thank you for all their support and love. 

Day 721: Nana’ Helper

www.gofundme.com/madimovesahead
Madison did great work with Stephanie today. Lots of walking in the snoozelin room and kids gym.



Madison was super excited to give Nana a gift today. Her and Pam worked on a special project- Madison sewed a bag for Nana! Thanks Pam! 

After dinner, Madison helped Nana with her medicine and tpn. She is a great help and is so curious and interested in anything to do with doctors, hospitals, medicine etc.