Thursday, February 26, 2015

I Love Someone Rare and Beautiful

World Rare Disease Day is held annually on the last day of February. The goal is to draw attention to rare diseases as an important public health issue that cannot be ignored. 2015 marks eight consecutive and successful years of Rare Disease Day.

Continuing the momentum, Rare Disease Day 2015 puts the focus on the daily lives of patients, families and caregivers who are living with a rare disease. The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.

The Rare Disease Day 2015 theme Living with a Rare Disease pays tribute to the millions and millions of parents, siblings, grandparents, spouses, aunts, uncles, cousins, and friends whose daily lives are impacted and who are living day-by-day, hand-in-hand with rare disease patients.

Watch the official Rare Disease Day 2015 video, which recognizes these individuals, and brings people living with a rare disease out of the shadows.

Over 7,000 distinct types of rare diseases exist, with more being discovered every day. It is estimated that 350 million people worldwide suffer from a rare disease. About half of all rare diseases affect children, and approximately 30% of children with these debilitating diseases will not live to see their 5th birthday.

While individual rare diseases have small patient populations, collectively the rare disease community is larger than the AIDS and Cancer communities combined. Nicole Boice, founder & CEO of Global Genes says, “This campaign helps unify a fractured community of thousands of small diseases and millions of people who have not had a collective voice. Together we can gain the momentum and exposure needed to influence changes that can lead to lifesaving research and treatments for people with rare diseases.

The lack of scientific knowledge and quality information often results in a delay in diagnosis, and the fact that there are often no existing cures adds to the high level of pain and suffering endured by patients and their families. We know many children and families who are affected by a rare disease, and we realize the importance of creating support and awareness for these rare conditions. You are strong alone, but we are stronger together.

Global Genes and the Gwendolyn Strong Foundation have brought back their popular "I love someone RARE & beautiful" tee in celebration of World Rare Disease Day. Andrew and I are wearing them proudly, to show our support of families and our friends who are impacted by rare diseases and other life-altering conditions.

Rare disease patients and their families face many challenges. The road ahead is long, but enormous progress is being made every day. 
By showing your support for people fighting rare diseases, you can help raise awareness and hope for millions.

 #WearThatYouCare #WRDD2015 #CareAboutRare #RareDiseaseDay #ILOVEsomeoneRAREandBEAUTIFUL

Thursday, February 19, 2015

Celebrating Love

We had Brennen's 10th birthday party on Valentine's Day.

I can't think of a more appropriate way to celebrate such a special boy than with a big ol' celebration of LOVE, surrounded by our closest family and his dearest friends.

It really was magical to have everyone together in our home. Friends who are with us on this crazy journey - some new, and some who have been there from the very beginning, all brought together by our love for one little boy. I couldn't help but stop and realize how important these people are to us. It was an honour to celebrate with all of you. We are so thankful to have you in Brennen's life.

It was such a joy to watch him take in all of the excitement of the day. The balloons, the cake, the music. Sounds of laughter and love and parents and kids, and knowing that it was all in celebration of him. I struggled to keep it together, when I wanted to cry tears of joy and pride watching his eyes light up, seeing his big bright smile, and knowing that we were celebrating not only the joy that we are able to bring to him, but the incredible amount of joy that he brings to all of us.

Here are some photos from Brennen's 10th birthday party.

Truly, we are blessed.

The details:
Brennen's cake was made by our friend Kim Churchill at Carter's Cupcakes
Heart-shaped Valentines by Minted 
Brennen's star crown by Fancy Pants Kids 
Children's caricatures by Julie at Sassy Tuna
Photos by Nate Gates

Wednesday, February 11, 2015

Dr. Seuss on the Loose

Last weekend, we were invited to share in the birthday celebration of our dear friend Carter.
Carter turned the big 4, and his Mom, Kim went all out to create the most awesome Dr. Seuss themed party.

It's all about the details, and this Momma didn't miss a thing! There was Moose Juice and Goose Juice, Pink Yink Ink, rainbow cake-pops and cotton candy cupcakes. Kim even dressed up as the Cat in the Hat and made the most incredible three-tiered Green Eggs and Ham cake. Seriously. There is nothing this woman can't do.

I was initially going to blog about this party just because of the eye candy - it was visually stunning, but then I got to chatting with Kim about the thought that went into every detail, and I just had to share it with all of you.

Birthday parties can be tricky for children with special needs. Carter has cerebral palsy and is profoundly deaf. His Mom, Kim has mentioned to me on numerous occasions that they have felt very left out at parties because her child was not able to participate because of his physical limitations. Kim says, "Carter is only four, and really has not gone to a whole lot of birthday parties, but we have already experienced parties where he was not able to play a game or was simply excluded because the parents just assumed that he couldn't play."

This is so true, but most of the limiting perceptions exist due to a lack of education and understanding. It is important to raise awareness about cerebral palsy and other disabilities to create a more accepting environment.

Kim created unique games like "Fox in Socks", where the parents had to run to get socks to put on their children. The child with most socks wins, and everyone had an equal opportunity to play. I had my serious game face on. Brennen liked it, I swear!

The games were created to include all levels of ability. The "Green Eggs and Ham Toss" was designed so that each child, regardless of their ability could toss or drop the items into the frying pan for a chance to win. Again, everyone had equal opportunity. There was a piƱata with pull strings instead of the kind you hit with a stick, allowing everyone to have a turn if they wished.

Kim says, "I'm sure you will agree that because of our children, we are much more educated and open to thinking about engaging all abilities. I also think it is my right and responsibility as Carter's mother to promote and advocate at all times possible, and to educate people in this area."

Kim even had Carter's deaf itinerant present to do sign language when Kim was reading Green Eggs and Ham. "This is why I had Cathy there signing. Sometimes, when people are able to make a personal connection to something unfamiliar it can take some of the fear or uncertainty away."

"My hope would be to motivate or inspire other parents to try to be creative and inclusive in designing the games and activities at their kids' parties... and having a facility that is wheelchair accessible is crucial!", says Kim.

Carter's birthday party was magical, and absolutely one for the record books. Kim, you are an amazing Mom, and an inspiration to myself and so many others. I appreciate the amount of thought that went into every aspect of your boy's special day. We all had a great time and most importantly, Carter felt loved and celebrated.

Happy Birthday, Carter!!!