Journey of a Butterfly

January

2012-02-21T15:29:00.002-05:00

2012 has been a busy year so far! Tatum had her second dilatation surgery on January 6, followed by dental on February 1. Both surgeries went well and Tatum is now eating solid food well for the first time in months! A common problem for EB children is the narrowing of the oesophagus due to scarring of the tissue. This leads to constant dilatation surgeries, and in many cases, the eventual insertion of a stomach feeding tube.

Tatum and I got to enjoy some time together over Christmas break and we spent it well! Our favourite thing to do is watch HGTV and play The Sims 3...so we had quite a few days of that! Very relaxing. We also did some baking.

We had a blast teaching Harley tricks and playing in the snow with the neighbours, too!

We both love to cook with Mama, and after looking around on Pinterest, we found some fun recipes that we decided to try out! They turned out to be absolutely delicious!

Crescent pizza roll-ups in the making.

These turned out great! So yummy.

Tatum showing off her pizza roll-up

Mozarella sticks.

We also decided to make some baked pasta as well, which was absolutely delicious! It was an evening well-spent.

My Hero

2012-01-15T12:58:00.001-05:00

My hero is not an actor or actress.My hero is not an athlete.
My hero is not a great historian.
My hero is someone with incredible strength and courage.
My hero is someone who inspires many.
My hero is someone who endures pain daily, and still manages to go
on and even smile.
My hero is someone who may not seem beautiful, but to me is gorgeous.
My hero is someone who makes me laugh, makes me cry,
and makes me proud every minute of every day.
My hero is an EB baby, an EB child, and an EB adult.

-Brenda G. (taken from 'Living with Epidermolysis Bullosa')

For those of you who have not read Tripp's story, it is available here. He, like Tatum, suffered from EB; however, Tripp's EB was of the Junctional form, in which most children do not survive infancy. Tripp beat the odds and made it past his second birthday, but sadly lost his battle with EB on Saturday, January 14, 2012 at the age of 2 years 8 months.

Selena Gomez

2011-11-07T11:54:00.001-05:00

On October 24, Selena Gomez did a concert at the John Labatt Centre in London, ON. We had a group of 7 of us all going! Tatum's neighbours, Jordyn and Jessye, their mom Jade, and "Yaya", Johannah, along with Natalie, Tatum and I all hopped in the car together. We went out for dinner first! It was really yummy, but such a long wait.

Here's Tatum and Jess in the car on our way!

After dinner we headed over to the JLC to find our seats!

The opening acts were Christina Grimmie and Shawn Desman. At the end of Shawn Desman's set, we went out to go purchase some souvenirs and took a couple of photos!

Finally, Selena took the stage!

Tatum had a blast!

Tatum's 5th Annual Walk for EB Awareness

2011-10-25T11:15:00.000-04:00

On October 22, we held our 5th annual event to raise EB awareness in our community. It was a great day with so many family and friends (both new and old!) coming out to show their support. The St. Thomas Kinsmen Club showed their support with about 10 members showing up. They committed to support Tatum by donating $200.00 to the cause for every member that came out. This led to a total of $2,000.00 being donated by the Kinsmen alone!!!

We had a great day with lots of music to entertain all the people that showed up! Justin Maki came, along with Askher and C, Double L, and The Sidemen. Askher What She Said performed the song "Butterfly", which was written in Tatum's honour.

We had about 120+ people show up and walk with us, which was great! It was so amazing to see all the people when we were doing our four laps around the park, led by the MyFM Cruiser.

We also had several draws and Tatum and a few of her friends won! They were so excited.

At the end of the day, we ended up raising just over $7,400.00 after expenses! What a great day. Can't wait for next year!

Tatum's Walk 2011

2011-09-25T20:53:00.000-04:00

I recently finished the 2011 EB Awareness video. Check it out! Tatum EB Hope 2011

Join us for Tatum's 5th Annual Walk!
When: October 22, 2011, 11:00am - 2:00pm
Where: Pinafore Park, St. Thomas Ontario

Come walk with Tatum. She will attempt to walk 2 times around the track to equal 1 mile. If she can do it, so can you!

Tatum started this awareness walk when she was only 4 years old. She had met other children with EB and said she wanted to do something to help them. It was close to Hallowe'en, so she said she wanted to trick-or-treat for donations. That night she raised almost $500.00

For more information and a pledge form, please visit Tatum's website.

Walk Preparations

2011-09-05T19:57:00.000-04:00

Tatum's mom and I have been hard at work (well...not really!) prepping for Tatum's Walk! This year is the 5th Annual Walk A Mile in Her Shoes for EB Awareness. We're having it at Pinafore Park on October 22, 2011, for those of you who are able to make it.
There will be lots of entertainment, prizes, and all sorts of stuff going on! Askher will be back this year to perform as well! The event runs from 11:00 a.m - 2:00 p.m. and the walk starts at noon. Each person should walk twice around the track to equal one mile...if Tatum can do it, so can you!

I've been working on a video to promote EB awareness and have been trying to convince Tatum to go on camera and say something along the lines of "I'm Tatum, and I have Epidermolysis Bullosa"; however, so far she's not liking the idea. So we shall see! Aside from the video...we have the pledge forms done (which can be picked up at Tatum's website - www.tatumebhope.org) and I have a friend who is actively working on the posters! We have 47 days left to pull everything together. It's going to be an awesome day :)

Tomorrow is the first day of school! Tatum is going into grade four this year. Finally a junior! Here's hoping that she will have a super fun and safe year at school this year.

Here's some photos of what Tatum and the family have been up to lately...

We all went to the beach and Tatum and Dad built a sand castle! It was a great day and we ended it with some yummy ice cream!

Harper Finkle is still growing like a weed!

We made a super yummy pizza the other day! Mmmm...delicious!

Hanging in the Swimspa

2011-08-05T17:10:00.000-04:00

Tatum's friend Mercedez came over the other day and they decided to spend some time in the swimspa. Since we are planning Tatum's Walk this year (scheduled for Saturday, October 22 at Pinafore Park) and I've been working on a new EB video, I decided to take some photos of them using the swimspa! Thought I would share some of my favourite shots.

Tatum loves her swimspa! It's awesome.

Tatum and her friend Mercedez.

Posing underwater! Such fun!

Meeting Cody Simpson

2011-08-02T17:13:00.004-04:00

At the end of June, Tatum, her mom Natalie, and I decided to take a trip to Mississauga...

Little did Tatum know, we were taking her to meet Cody Simpson! For those of you who don't know who Cody is, he's a young singer from Australia. He's kind of like Justin Bieber (in fact, I used to call him "wannabe-Bieber"!) Tatum loves both "the Biebs" and Cody, so Natalie and I thought that meeting Cody would be a close second prize, so to speak, to meeting Bieber himself! So we kept it a secret from her until we stopped at the Sleep Country store in Mississauga.

One of the girls who works at the Mississauga store was kind enough to go and buy 2 copies of Cody's CD so that we could get VIP passes to meet Cody! Tatum was under the impression that Natalie had to give a presentation on pillows, so it was quite a surprise to her when she found out that we were actually taking her to meet Cody! She was pretty excited...

We headed to HMV Square One Mall and settled in for the long wait - we had almost 3 hours to go! Tatum was very patient - she's such an awesome kid :)

Finally, after a long wait we got about a 30-second glimpse of Cody while he signed our CDs, before heading out for dinner at Swiss Chalet!

All in all, it was a great day and one that won't soon be forgotten! We had a great time!

Swimspa Arrival

2011-08-01T18:27:00.000-04:00

Earlier this summer, Tatum's brand new therapy pool was installed in the backyard! Thanks to many generous donations raised from Tatum's Walk, we were able to raise over $20,000 towards this pool. Basically, it's an oversized hot tub, that you can swim in! It's perfect, because swimming is one of the only physical activities that Tatum can do and enjoys, and she can use it year round! It was ordered with a saltwater system, which is easier on her skin than chemicals, and actually helps clear her skin up and assist in faster healing of her wounds.

The day the swimspa came, it had to be lifted over the house by a 100-foot high crane. Yarmouth Cranes was kind enough to donate the time and arrived early in the morning to set up.

Shortly after, the swimspa arrived on the delivery truck! Before we knew it, it was time for the lift over the house and into the backyard...

Here they are working hard to get it into place!

Here's Natalie and I hard at work:

Finally, the swimspa in its new home.

Thanks to Yarmouth Cranes for doing all the work free of charge!! :)