Rare Disease Day 2016

Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision makers about rare diseases and their impact on patients' lives. 

I wrote about Rare Disease Day last year - you can see that HERE.

The theme of Rare Disease Day 2016, "Patient Voice", recognizes the crucial role that patients play in voicing their needs and in instigating change that improves their lives and the lives of their families and caregivers.

The Rare Disease Day 2016 slogan ‘Join us in making the voice of rare diseases heard’ appeals to a wider audience, those that are not living with or directly affected by a rare disease, to join the rare disease community in making known the impact of rare diseases. People living with a rare disease and their families are often isolated. The wider community can help to bring them out of this isolation.
Patients and patient advocates use their voice to bring about change that:

• Ensures that politicians continuously and increasingly acknowledge rare diseases as a public health policy priority at both national and international levels.
• Increases and improves rare disease research and orphan drug development.
• Achieves equal access to quality treatment and care at local, national and European levels, as well as earlier and better diagnosis of rare diseases.
• Supports the development and implementation of national plans and policies for rare diseases in a number of countries.
• Helps to reduce isolation sometimes felt by people living with a rare disease and their families.

Rare Disease Day amplifies the voice of rare disease patients so that it is heard all over the world. 

I was invited to attend a Rare Disease Day 2016 event held at the MUN Medical Education Centre. This event brought together parents and health care providers, and featured some wonderful speakers with their own unique perspectives on rare diseases.

Dr. Kathy Hodgkinson is a researcher at Memorial University, who spoke about the importance of rare disease research here in Newfoundland. Dr. Hodgkinson talked about her work with families who carry the gene for the rare but deadly arrhythmogenic right ventricular cardiomyopathy (ARVC) - a form of heart disease that usually appears in early adulthood and causes sudden cardiac death. She described the impact her research has had on these families, since they are now able to identify the gene responsible for ARVC.

Lucy-Anne Vokey is a former teacher and parent of three children (including Hannah, who I wrote about HERE). Lucy-Anne spoke about the joys and challenges of parenting a child with a rare diagnosis.

Terry Kelly, one of my favourite humans (see HERE and HERE) was the Keynote Speaker for the event. Terry is a paralympian, singer, songwriter, entertainer, and lover of life. At the age of two, Terry's eyes were removed due to retinoblastoma, a rare, hereditary form of cancer. At the age of seven, he left his home in St. John's, Newfoundland to attend the Halifax School for the Blind in Nova Scotia. It wasn't easy for either Terry or his parents, but the difficulties initiated Terry's quest for challenge, developed his love of life and nurtured his musical talent. Terry uses his life experiences to touch the hearts of many and has motivated tens of thousands (including myself) to overcome personal challenges and live their lives to the fullest.

It was a special event, made notable by the powerful stories that were shared by some really special people. Lucy-Anne spoke so beautifully and emotionally about her daughter, describing many of the stresses involved with medical appointments and navigating the education system. She spoke to my heart when she talked about how much she has learned from her child, concluding with "We've come to realize that Hannah is our teacher, not the student."

Terry talked about his experience growing up, going to the School for the Blind, and how his parents had the incredible courage to send him there, knowing it would be the best place for him to learn and grow and gain real life experiences.

Terry also talked about his visit with my family over Christmas, and how he felt the love around Brennen as soon as he entered our home. It was very touching. I always appreciate when someone else can see and experience what I do every day - the joy and love around my little boy and the energy that comes from him is hard to describe in words, but Terry picked up on it right away. He ended by saying, "I hope you all have the opportunity to let someone like Brennen hug you with their beautiful light."

A rare disease is any disorder that affects a small percentage of the population. Although the diseases may be rare, the number of people fighting them is great, and the patients and their families share a common struggle. Families touched by rare disease are often left in the dark with little or no community support, advocacy or outreach programs. We need more events and opportunities like this one - with doctors and nurses, therapists and researchers, families and caregivers, all coming together for a common purpose - to raise awareness of rare diseases and to bring compassion and understanding to those who live with them.

We will celebrate, celebrate life
Find the joy in the journey
And shine our light.
Many hearts, many minds grow hope and make us strong
Together we’ll overcome and celebrate life

- Terry Kelly, "Celebrate Life"

The Gift of Music

I met Terry Kelly back in October, when he was the keynote speaker for the Cape to Cabot 2015 road race, which I wrote about HERE.

Upon hearing him speak, I was immediately impressed with Terry's positive outlook and distinct sense of purpose. He is filled with love and hope and he passes that on to anyone who is open to receiving it. His presentation (and his presence) really had an impact on me that day, and I knew that there was a place in my heart for Mr. Terry Kelly.

Terry and I chatted a little bit back in October, and I told him about my son, Brennen. He was very curious about him, and by the end of our conversation, he said that he would love to come and play for Brennen when he is in town again. True to his word, Terry and his wife, Anne paid us a visit this week! What a wonderful Christmas gift!

Terry Kelly writes in the liner notes of his Christmas album, 'Olde Tyme Christmas':

"Christmas has many colours, many sounds, an abundance of fragrances and tastes and, of course, the ever accumulating basket of memories and traditions. All of these awaken a range of feelings and emotions in each of us every Christmas."

"Music has a mystical and wondrous way of resurrecting our senses and memories of Christmases past. It can also play a significant role in creating new memories - both happy and sad."

Terry, your music, your thoughtfulness, and your kind compassion was truly a gift to our family this Christmas.

Terry was very in tune with Brennen's reactions and responses. He spoke gently to him, held his hands, and was very comfortable and engaged with Brennen right from first meeting. He sat close to Brennen, and played his guitar while Brennen's little foot was touching it, letting him feel the vibrations in the instrument.

Brennen loved the music and enjoyed his private performance. These are the meaningful moments I'm always talking about - the moments that make life special. These are the memories I go back to when things get rough, when parenting is hard, when I don't have the answers. I save up these memories in my mind's keepsake box, ready to be accessed when needed (and they will be needed).

I have to say that while we were expecting this afternoon to be a very moving experience for our family, it was clear that it meant a lot to Terry as well, in a way that I hadn't quite anticipated. Terry is soulful, emotional, and he wears his heart on his sleeve. Terry and Anne are my kind of people, and I am honoured now to call them our friends.

In raising a child with a disability, undoubtedly there are challenges, but there are so many blessings, and we seek them out. We can't control a lot of things in life, but we can control how we feel about them, and we can choose to be happy. Meeting Terry Kelly. Having him join us in our home, singing Christmas songs and feeling that even on the coldest of days, we were in the warmest of places. That's what Brennen does for us, over and over again. He is our happy place.

***** 

We thought we would give Terry one of our Christmas cards with a thank you message and a photo of our family.. but then I realized that he wouldn't be able to see it. What's the point of a card, I thought, if the receiver couldn't gather any information from it? SO.. we decided to write it in braille! (because how hard could it be, right?!) Andrew and I spent the night researching and downloading information on how to write / make braille, and we totally nailed it!

After several attempts with different methods - one including dots of nail polish (which actually had a lot of potential until some of the dots started running together) - we found that using a ballpoint pen with just the right amount of pressure so as not to poke holes through the paper made perfect braille-sized imprints!

Thank you, Terry, for bringing the gift of music into our home, and for adding to our basket of memories.
I am honoured and humbled, inspired and just - so incredibly grateful.

We will be sure to keep in touch! A new year is coming, and it's gonna be a good one!

Terry Kelly: The Power of the Dream

If you were to ask a Newfoundlander if they know who Terry Kelly is, most would say "Is he the blind guy who plays guitar and sings that song about Remembrance Day?"

It's true, Terry Kelly is a Newfoundland-born singer, songwriter, and composer of "A Pittance of Time", the powerful song that circles the globe every year around November 11th and pays tribute to veterans, peacemakers and heroes. Many may not know that Terry is also an accomplished athlete. He was a member of the Canadian Track Team that competed in the 1980 Paralympics, and he was the third blind person in the world to run a mile in less than five minutes! Terry has completed countless triathlons and road races including the 2015 Tely 10 right here in St. John's.

In March 2014, Terry joined two other visually impaired adventurers who journeyed by horseback on a 3-week guided expedition in Argentina. The group travelled into the heart of the Andes as part of a vision quest documentary, "Blind Spot; Moments Unseen". The film chronicles a voyage of self-discovery and expands our perspective on what we see, what we can't see, and what we overlook.

Terry is blind as a result of hereditary cancer called retinoblastoma. When he was a very young child, he had both of his eyes removed. He has two brothers, a sister, and a son who have also lost one eye from the disease.

Terry was recently invited to be the keynote speaker for the RE/MAX Cape to Cabot Speaker Series, and I was very excited to attend his presentation!

Cape to Cabot is Newfoundland and Labrador's premier road racing event, beginning at historic Cape Spear, and finishing at Cabot Tower in St. John's. The race is very popular among serious runners, selling out every year well in advance of the start date. The 20 km course is one of the toughest they will ever face, but covers some beautiful and historic ground along the way.

I arrived at the Marine Institute on October 17th, along with 450 runners who were picking up their registration kits. I quickly realized that I was most likely the only soul there who was NOT in the race, and so I made my way to the Hampton Hall Lecture Theatre, feeling totally inadequate, but excited to take in Terry's presentation!

It wasn't long into his talk that I realized I was in exactly the right place.
I was exactly where I needed to be at that moment.. at this moment in my life.

Terry’s “Celebrate Life through the Power of the Dream” presentation is about individual triumphs, overcoming real or imagined disabilities and having respect for oneself and others. Terry believes that it is important to consider mistakes as opportunities to learn, and he is convinced that believing in yourself is the key that will open doors to a rewarding and successful life.

Terry shared many of the tools and skills he uses to transform challenges into gifts and how to use those gifts to inspire individuals to motivate and help themselves and others.

Terry shares his message through words and music, captivating the crowd with several of his original songs that day. He sings as if he's telling a story, and I swear his voice was the only sound on the island at that moment.

Terry talks about "Dream Adjustment". "I had a dream to play hockey, and I didn't think it could be." He told the story of how he learned to play hockey as a young student at the Halifax School for the Blind in Nova Scotia. They used a tin can instead of a puck, so they could hear it, and they put buzzers on the nets to know where they were. He says, "Throwing away the puck and embracing that tin can wasn't going to put me in the NHL, but it brought me thousands of hours of joy playing hockey with my son, and playing hockey with my friends. I was a hockey player. I am a hockey player, because of that little dream adjustment."

He asked the audience to think about our own lives, and where we might be depriving ourselves because of what he calls 'excuse-itis' - because of age, because of our jobs, because of whatever. "Please don't deny yourself, don't let your dreams be taken away. It's only you, and only me who can stop ourselves from enjoying what we want to enjoy. Our subconscious mind is stopping most of us from doing a lot of stuff that we want to do. There are ways to do the things we want to do, just maybe with a dream adjustment." 
 
He talks about discovering our purpose, taking care of our bodies and being balanced from a spiritual, mental, social, emotional, physical and financial perspective.

"Typically, we need to have other people with us and around us to support us, to love us, and to share with us our goals and the things that happen to us in life, but if we don't start from right here, if you don't start with you, nothing happens."

The Power of the Dream is intended to encourage people of the world with or without eyesight to review how we see ourselves; in short, so that we might respect and celebrate our differences.

"Changing what it means to be blind. 

Step by step one day at a time.  

Still much to do but it shall be 

That the sighted eyes of the world will be able to see

And there will be changes."

I know that personally, since becoming the parent of a child with special needs and entering into this world of 'disability', my eyes have been opened to the broad spectrum of beauty, the value of uniqueness and the common thread that binds us all, regardless of ability. I care more, and not only because I have a child who connects me to this greater community, but because I have learned from individuals like Terry Kelly to see people for their hearts, their capabilities, their spirit and their determination.

Terry's love of life is contagious, and so is his positive outlook. I learned a lot from him that day. I learned that we are not defined by our titles, by our abilities, or by what we think people see. We are defined only by who we are inside, and how we use our gifts and our abilities to improve our lives and to affect others. 

Terry, you are truly an inspiration. It was absolutely an honour to meet you, and I look forward to seeing you again when you are back in town!

This article also appears in The Telegram, HERE