Friday, March 24, 2017

Rare Disease Day 2017


February 28th, 2017 marked the 10th annual Rare Disease Day!

"With research, possibilities are limitless".

The theme this year is "Research". Rare disease research is crucial to providing patients with the solutions they need, whether it is a treatment, cure, or improved care.  It is also imperative that researchers work closely with patients, families, caregivers and advocacy groups to maximize the chances for success in advancing rare diseases research.

Imagine what it would be like to live without answers to the most basic of questions. This is the reality for many rare disease patients. Research can lead to the identification of previously unknown diseases and can increase understanding of diseases. It can enable doctors to give correct diagnosis and provides information to patients about their disease. It can lead to the development of new innovative treatments.. and in some cases a cure. People living with a rare disease are sometimes unable to find answers and medical solutions they need, often because of a lack of research. To illustrate this frustration, this year's video draws a parallel with a routine that many of us go through multiple times a day - searching for answers on the internet. The video highlights how isolating it is when you search on the internet but receive the response 'Your search had no results'.



The goal of Rare Disease Day is to connect patients, families, caregivers, and patient organizations; to provide opportunities for patients and parents to share their stories; and to promote education, awareness, and advocacy. We were a little late celebrating Rare Disease Day here in Newfoundland, but we had a gathering this past Thursday to raise awareness of the day and to acknowledge the experiences of rare disease patients and their families right here in our province.

Sarah Predham, a Genetic Counsellor with the Provincial Medical Genetics Program of Eastern Health, presented "Genetics and Rare Disease: An Evolutionary Tale".


Simon Lono is a health care and rare disease advocate. He spoke about his experience as a patient living with a rare diagnosis, and his struggles within the health care system.


Leah Farrell is a parent of a child with a rare diagnosis, and a dear friend of mine. (I shared Leah's son's story HERE). Leah spoke about creating community and making connections with other families living with a rare diagnosis.


To close the evening, we were treated to a fabulous performance by the Perlin Players - a division of the Vera Perlin Society, whose mission is to secure and/or provide quality service and support for individuals with a developmental disability and their families in the St. John's and surrounding area, enabling them to participate in all areas of community living.

The Perlin Players are an extraordinary group of individuals who are well-known for their many successful lip-sync productions and dinner theatre shows. This was my first time seeing the group perform, and I was blown away! If you have the opportunity to take in a show, I would absolutely recommend it! These guys did not disappoint!


A disease is considered to be rare when it affects less than 1 in 2,000 people. Due to the low prevalence of each disease, finding somebody else with the same condition can be a challenge. If you are affected by a rare disease, you may be the only person in your local community or the only person your doctor has ever seen with that condition. This can feel incredibly isolating, but it is important to remember that you are not alone! Social media networks have become a vital communication tool for patients and their families, allowing them to connect with others living with a similar diagnosis, and to meaningfully support one another. Rare Disease Day and events like this one allow the greater community to come together and show our support for those living with a rare disease, to learn about various rare conditions, and to create awareness and advocacy around the more than 7,000 rare diseases and disorders worldwide.

For more information on the Rare Disease Day campaign, visit http://www.rarediseaseday.org/

Monday, March 6, 2017

unstoppABLE

Easter Seals Canada has launched a new fundraising and awareness campaign called "Unstoppable", and it couldn't come at a better time for us. After all that Brennen has been through with this most recent surgery (see HERE), he is making an incredible recovery, and proving to everyone that he truly is unstoppABLE!


As kids, we're told that we can do anything we put our mind to - we can be anything we want to be if we want it bad enough. We're told that anything is possible with hard work, passion and dedication. If we have dreams, set goals and give our best effort, there are no limits to what we can achieve. Easter Seals believes it’s no different for kids living with disabilities. For these kids, facing challenges in life may be inevitable... but backing down is optional. With a lot of perseverance and some help from Easter Seals, we believe all kids living with disabilities can become #unstoppable!

The Unstoppable campaign features the accomplishments of three young people who have grown up with support from Easter Seals. Brandon Liston is a confident and charismatic speaker thanks to his role as Easter Seals National Ambassador. Zak Madell is a Paralympic wheelchair rugby athlete who, after only one year in the sport, led Team Canada to a silver medal at the 2012 London Paralympics. Victoria Chen is a top student, an accomplished pianist and a former Provincial Ambassador for Easter Seals Ontario.

Easter Seals is dedicated to fully enhancing the quality of life, self-esteem and self-determination of all Canadians living with disabilities. As Canada's largest local provider of programs, services, issues-leadership and development for the disability community, Easter Seals provincial organizations offer transformative programs and services at the local level.

Serving a broad range of people with varying physical, intellectual, sensory and learning disabilities, Easter Seals helps to ensure that everyone living with a disability has access to the equipment, programs, services and support they need to make the most of their abilities.

For some, what are typically seen as the simple everyday routines and rhythms of life can be fraught with barriers, challenges and obstacles - making life anything but simple. Having a disability can severely limit a person’s ability to access their world and enjoy the same experiences as their able-bodied peers. For many, a disability can even affect how they see themselves and how they view their own abilities. It can lead to lower self-confidence and self-esteem which can cause them to doubt their potential and their ability to contribute positively to their community.



It is the mandate of Easter Seals across Canada to help with the programs, services, support and assistance that Canadians living with disabilities need to truly access their world and live life to the fullest. With the support of donors, sponsors and partners, Easter Seals helps change the lives of children, youth and adults living with disabilities from coast to coast.


Visit eastersealsnl.ca and donate today to help kids like Brennen become #unstoppable

Click HERE to order your own t-shirt. They have sizes for the whole family!

Saturday, February 25, 2017

And, We're Home!

My boy is home!!!

After 28 days in the hospital, and well on his way to recovery, Brennen was discharged from the Janeway this past Thursday!

Though he is still having some pain and discomfort, he is also having lots of happy time and big bright smiles for everyone! It is hard to believe that the surgery is over. We were so anxious about it for so long, and now (hopefully) the worst is behind us.

The correction in Brennen's spine is incredible. He gained 5 inches in height, and he looks like a different child. His x-rays are shocking. As in, they literally took my breath away. The sight of all of that metal inside of his tiny little frame is really off-putting, but knowing the benefits he will gain from it makes us very hopeful.

He has been sitting up in his wheelchair, and is more comfortable now than he ever has been in this chair - even so soon post-op. He still has 58 staples in his back, which will be coming out on Tuesday. The incision is clean and long and will leave him with a serious scar to show what an unbelievably strong boy he is (in case anyone needed proof). His poor little body has been through so much, it breaks my heart, but he has handled it all like a champ!

Andrew and I are so happy to have our boy back where he belongs. The past several weeks have been tough on everyone, and we are happy to now be enjoying the comforts of home. We are looking forward to getting back to some sort of 'normal'. We are excited to be able to do fun things with Brennen again like we used to.. before he became too uncomfortable to tolerate any sort of activity. We are all more comfortable now. I am aware that he still has a ways to go to be fully recovered, but I cannot help but focus on the beauty of today and the amazing potential of tomorrow.


Thank you to Megan Nicole Art and Illustration for this beautiful drawing of our family - bags packed, headed home from the Janeway! It is so personal and thoughtful, and we absolutely adore it!! I can't wait for warmer temperatures to be able to get out and enjoy a picnic just like this!!

Thank you again to everyone who has been thinking of us and sending well wishes to our precious boy. We made it through a very challenging time thanks to the love and support of all of you! xo

Thursday, February 16, 2017

Spinal Fusion

On Tuesday, February 7th, Brennen underwent spinal fusion surgery.


Due to neuromuscular scoliosis (related to his cerebral palsy), Brennen had a severe curve in his spine that had progressed gradually over the past few years, and got significantly worse over the last couple of months. He has been in a tremendous amount of pain and discomfort (as I talked about HERE), to the point where he could no longer tolerate sitting or even lying down, and so we found ourselves at a point where the surgery was our only option. Having his spine fused will stop the progression of the curve and straighten his spine, which also helps to align his hips and pelvis, putting less stress on his internal organs.

Brennen has had surgeries in the past (ie. this one), and while I hesitate to say that it gets easier, it does become familiar. We checked into the Janeway again on Monday, February 6th (the day after his birthday), and geared ourselves up for surgery the following day.

We are fortunate to have developed a great relationship with many of the doctors, nurses and staff who have been looking after our boy for many years now. While this may be routine for them, they recognize that it is not the norm for us and they treated us with the upmost courtesy, respect and understanding. We were worried, but we knew we were in good hands.


The surgery went as well as could be expected. By the hands of highly skilled surgeons, Brennen's spine was fused from T3 to his pelvis. He had instrumentation (2 rods and 42 screws) attached directly to his vertebrae to support his spine. The procedure took six hours, and thankfully there were no complications. His bleeding was controlled, and while they had units of blood ready for him, he did not require a transfusion. Instead, he was able to get some of his own blood back via a "cell saver" (intraoperative cell salvage machine).

When we were able to see Brennen in the PICU, my heart crumbled. Even though I knew that the surgery was successful and he was going to be fine, I just can't come to terms with the fact that his little body has to go through so much because of his disability. I grieve each thing, each opportunity, each experience that has been stolen from him, and I grieve for the fact that I am not able to fulfill the most fundamental maternal instinct - to protect my child from pain and suffering. 


After the surgery, Brennen had a fair amount of bleeding, and was given a transfusion of plasma to help with clotting. He remained on a ventilator for breathing support, and he had an NG tube from his nose to his stomach for nutrition. He had IVs in both hands and an arterial line in his foot. He had a butterfly needle in his arm for subcutaneous morphine injections, and was monitored very closely for pain management. He spent a night in the Pediatric Intensive Care Unit before returning to our cozy room on J4 Surgery, where we are currently.


This lucky elephant was given to Brennen by a young boy we met in the hospital this week. While going through a difficult time himself, he showed such empathy and compassion for Brennen, and he really touched my heart. I truly believe that people come into your life for a reason. I was in need of a pick-me-up, and this one came at just the right time. Life can be painful in all sorts of ways, and it made me realize that while I would rather have an easy-breezy life, that is not realistic, nor would it be so rich and full. Thank you, Kaisen, for this special gift. You made a big impact on our whole family, and we will never forget your kindness. You have inspired us, and I hope that even in these challenging times, as we cultivate more love and light, life will be a bit easier for all of us. We hope to see you again!


Brennen had a couple of episodes of 'respiratory distress' shortly after the surgery, where his oxygen levels would drop and they had to call in back-up, but he has been doing relatively well in the days since. His pain is the biggest issue right now, and though he is on some heavy medications, he still has quite a bit of discomfort.

We are taking things day by day. We are seeing some improvements and feel encouraged by Brennen's overall disposition. Andrew and I are taking turns at the hospital so one of us is always with Brennen. The stress level is definitely high, but seeing him start to have increased periods of awake time with slightly less pain is keeping our hearts happy and our spirits up.

Brennen is amazing and he is fighting this with everything he's got. His resilience, determination, and courage are far greater than my own. Once again, he is teaching us what strength truly is and we are so inspired by our brave little boy.


Thank you all for your concern, prayers and love for our boy. 
We so appreciate your support and your positive thoughts for all of us.

Sunday, February 5, 2017

But first I will make you strong

My baby boy turns 12 years old today!

We spent the last ten days in the hospital, keeping Brennen comfortable with pain medication and going through all of the pre-op assessment and tests required before his surgery next week.

They did blood test after blood test to check his white blood cell count and hemoglobin levels. He had to be gradually weaned off of his seizure medication because it posed a bleeding risk for surgery, and he was started on a new one that seems to be working well with no negative effects, so far. We met with the anesthesiologist who will prepare him for the procedure, and the team from the PICU, who will be ready and waiting for him afterwards.

He had multiple x-rays and was injected with a radioactive dye for a bone scan in nuclear medicine. He had an echo-cardiogram as well as an EKG, which showed that his heart is good and strong (and full of love and life, which we already knew!)

We were able to take Brennen home for the weekend, to celebrate his birthday and to enjoy spending some quality time with him before his surgery. He will be readmitted on Monday, and surgery is scheduled for Tuesday.

Today we will celebrate our boy. Not with the biggest party or the most elaborate decorations, but by surrounding him with so much love that he never ever questions his place in this world. He will know that we are beyond overwhelmed with gratitude for the day that he was born, and he will feel how immense and deep the love of our family is for him.

We will hold him close and thank our lucky stars that he is here and he is ours. The next couple of weeks will be challenging, and Brennen will be in the fight of his life, but he is strong, and he will make it through. Brennen's disability has become second nature to us. It is a part of our lives that has become so intricately woven that it is impossible to separate from anything else, and we like it that way. We can handle it. But at times like this, the fear takes hold and brings back all of the feelings and emotions from when he was first diagnosed, and it's fucking terrifying.

My heart breaks because he has to go through this. The worry and sadness are suffocating at times, but I know that he is in the best of hands and will be back to himself before we know it. He needs this surgery, there is no question. He is extremely uncomfortable, and sitting has become impossible for him. The curve in his spine is severe, and poses a risk to his internal organs if left uncorrected, so we really have no other option.

I am so thankful to our family and friends who have been so supportive and helpful these past few weeks. I am thankful that we have so many people to count on and who are looking out for us right now, and I am thankful for my beautiful boy, who despite tough circumstances, still has a sparkle in his eye.

Happy Birthday, Brennen. I love you, I love you, I love you.


"You're gonna be happy," said life, "but first I will make you strong."

Saturday, January 28, 2017

Hanging in there...

A quick update to let you know where we are right now.

Brennen was admitted to the Janeway earlier this week for pain management and observation. He has been terribly uncomfortable the past few weeks because of the curve in his spine and how that affects his hips and really everything else. He hasn't been able to sit up at all, and has been going downhill quickly, to the point where he is no longer even comfortable lying down. We knew that he would be having surgery soon, but it looks like it will be even sooner than we thought - like in the next week or two. 

He is having spinal fusion surgery. Don't Google it. It's a doozie. They are doing all of the pre-op tests now and are keeping him comfortable with heavy pain meds. We are not sure if we will be here (in the hospital) until his surgery, or if we might be able to go home in between, but we are settling in for the long haul. 


Brennen had a good day today. The smiles have been few and far between lately, so we are hanging on to every glimmer we can get! Underneath all of the pain and discomfort and medicated drowsiness, my boy is there, just waiting to get back to his happy ol' self. And we are cheering him on, preparing ourselves for what's coming, and focusing on the good. We are scared, but we are digging deep to find the strength and courage that we know is there (sometimes I don't believe it's there, but I keep telling myself it is). Life is hard, and I am OK with it being hard when there are things that I can fix, but I find it hard to breathe when there are hard things that I cannot fix. Like now.

Thank you to everyone for the outpouring of love and support for my sweet little boy. Thank you for your calls and visits, your thoughts and emails. 
I appreciate every single one.

Please keep all the positive vibes coming our way. We will surely need them!

I will keep you posted as things progress...

-Julie xo

Saturday, January 21, 2017

Crippled



As a parent of a child with a physical disability and a strong disability advocate, I am continually searching for new initiatives that are pushing to make a difference and to propel the discussion of inclusion in our community. I was thrilled to be able to attend the stage reading and discussion of "Crippled", a play in development by playwright Paul David Power.

Crippled is a product of Paul's own experience living with a physical disability since birth. As a member of the arts community for many years, Paul also strives to further the representation of deaf and disabled artists in the Atlantic Region.

"Crippled is written by and about a person living with a physical disability. It's a new work taking place in the Atlantic Region which assists in putting diversity in our arts community in the spotlight in our region. It is Paul's hope that Crippled will not only entertain, but also inspire discussion and action to expand the diversity of our theatre scene for artists living with a disability."

Paul was joined on stage by actors Pat Dempsey, Gregory Clayton King, Kyle McDavid, and Janet O'Reilly. They delivered a heart-wrenching performance that brought the script to life in such a way that made the audience feel with their whole hearts what the character, Tony, was living.


The plot followed the main character, Tony, read by Paul, as he reflected on a lifetime of ridicule and humiliation because of his disability. Through a series of flashbacks, we see how Tony was rejected, made fun of, and assumed to be less capable because he wore leg braces and used crutches for mobility. He is short in stature – a result of skeletal dysplasia (under development of limbs – in this case, the legs). Tony has spent his whole life feeling “different” and while he has always kept a positive attitude, on this night he seemed to have reached his limit. He was tired of having to be "accepted", and tired of having to constantly fight for an identity beyond a physicality that set him apart.

My heart was left in a puddle on the floor of the theatre that night, when Paul / Tony described the scene in which his mother, having just given birth to him, was visited by a Nun in her hospital room:

"Well, my dear, we must not question God's reasoning for things like this. We must just accept them and believe that God has a plan. You have two other beautiful children. Enjoy and treasure them. Pray that God takes this baby. He's very weak. He may not last through the night, and my dear, maybe that's a blessing. He's never going to have any kind of life. Is that what you want for him? He won't walk or talk. You have to pray for peace for him. Pray for peace and accept that it is God's will."

Tony overheard his mother telling the story of his birth, and was left to wonder:

"When we hear that someone has a baby or is expecting, it's always the image of cute little babies and celebrating. I can't help but think my birth was a disappointment. I mean everybody hopes for a healthy little baby. Everybody celebrates when the baby is healthy. But when that baby isn't, what then? I mean, does the celebrating go away? Is it less of a joyous occasion? Is that baby doomed to a world of lower expectations from the very start? A world that must 'accept' them?"

I cried so hard. I was that mother. That was my baby.

After a very emotional performance, the group took a short break to allow everyone to digest and recompose before continuing with the evening's schedule.


The stage reading was followed by a panel discussion that included Paul Power with dramaturge Robert Chafe, Danielle Irvine, Leah Lewis, and moderator, Maggie Gillis from CBC. The result was a very interesting and informed discussion of disability in the arts and how to expand the diversity in our local arts community.

It is important when talking about inclusion and accessibility to recognize that people with disabilities aren't just spectators - they are artists and creators and valuable contributors. Typically, when theatres and venues think about including people with disabilities, they think about things like where the wheelchairs will be located in the audience, and how a ramp will improve the entrance way. While, yes, improving accessibility is a wonderful thing, it is also important to talk about how we can include people with disabilities as producers of art - as performers, actors, musicians, etc.

What I observed this night was a microcosm of what I want to see more of in the real world - inclusion at its best - people of all abilities and from different backgrounds working together and learning from each other.

There is no need to hide our differences. The fact is that my son might not be an actor or performer (or a doctor or lawyer), and that's ok. He is incredible in other ways, and I am comforted by the fact that the world of opportunities for people with disabilities continues to expand because people like Paul Power explore, develop, and celebrate our differences and offer its lessons to the world.

Thank you, Paul, for your incredible talent and your beautiful insight. It was a pleasure to witness and to be a part of. I wish you great success with your work, and I look forward to seeing the final play when it is performed here in St. John's. I will be the first in line for tickets, and I will recommend it to anyone and everyone with a beating heart inside their chest.


For more information about the project, visit http://www.paulpower.ca/crippled.html