Battle of Rare Disease Underdogs February 21 2015
At the time my father-in-law was diagnosed with Amyloidosis 25 years ago, my friends in the medical profession surprisingly knew about the disease by virtue of it being rare. It was something of a poster-child for rare diseases to those studying to become doctors. It is strikingly odd to me that it would be the representative disease knowing there are as many as 7,000 identified rare diseases.
In a weird way it brought some comfort to get a nod of understanding from friends practising medicine along with the compassion for what we were facing and what my father-in-law was tortured by. More often, our family was alone in the experience with Amyloidosis. Emotions come by the dozens when you are forced to deal with a rare disease. The disease isolates you with the feeling that you are the only one hit by it. At the same time, it binds you to a broader circle of people with other rare diseases who fight like underdogs to find answers.
Drawn to Rare Disease Community for Second Time
While I cannot relate directly to the feelings of a person who is suffering from a rare disease, 24 years after my father-in-law died from Amyloidosis, I have become part of the rare disease community for a second time. This time from a different perspective. My dread now comes from being a carrier to a disease that took some rehearsing to learn how to pronounce – Metachromatic Leukodystrophy – simplified by the MLD acronym. The gene is also carried by my two children.
Worse than being a carrier is watching my sister’s granddaughter gradually lose all of her abilities to move, talk, and eat and knowing she will likely succumb to MLD within the next three years. The wave of emotions come and go between an effort to remain strong, supportive and even positive, as all concerned cope with the sadness and daily challenges. As a collective family unit we endeavor not to dwell on the inevitable, but to stay focussed on bringing joy to young Hailey and easing the struggle for her parents where possible.
Earlier this week I joined a Twitter Chat following #abcdrbchat about rare diseases. It was a prelude to Rare Disease Day on February 28. I was surprised at my own mix of emotions reading through the flurry of chatter. I felt a bit numbed by the host of voices. Much of the 140-character Twitter exchange touched on the basics of awareness of rare diseases and defining stats such as, fewer than 200,000 known cases of rare disease in the U.S. and 75% of rare diseases affect children. I was impatiently craving to see posts about progress and resolutions.
Hope for Progress
Not being directly afflicted by MLD, I often feel like a bystander – confused and baffled about how to act or help. Regardless of the effort I make, it never seems like enough. In truth, it is the collective effort that matters and the inspiration that we feed to one another to push harder that moves us forward.
There is a natural fascination with numbers stating how rare a disease is, but it is a double-edged sword. None of us would wish for more people to battle a rare disease for the benefit of more attention. And, logically, diseases that affect a high percentage of the population warrant the attention of funding to find cures and treatments. It is an undeniable dilemma. From time to time some rare diseases receive notoriety from unexpected places. Amyloidosis was a subject case on an episode of the House TV series.
For the most part, rare diseases are the underdogs with few champions to address the needs for early detection, medical expertise for treatment and research funding for cures. Progress is often achieved through grass-root efforts and dogged determination of select individuals who live and breathe by the four letter word “hope”. They are the drivers of success.
Today when you look for information and support for Amyloidosis, it takes minutes to find answers as opposed to weeks of searching that it took my sister-in-law (even with her Masters in Library Science) 25 years ago. The National Organization of Rare Diseases (NORD) is a great resource with their rare disease database. There are trials, treatments, detailed reports and encouragement to those newly diagnosed. The road to a cure is still a long one – for both MLD and Amyloidosis. We will get there sooner with more champions and supports pulling together. With the help of the internet and benefits of social media, organizations are gaining momentum, with a means of broad communication for initiatives such as the Rare Disease Day.
MLD has the force of Bethany’s Hope Foundation behind it in Canada. They are making great strides in research and are campaigning for 2018 to begin trials on patients. The fundraising by the Hailey’s Dreams Foundation has recently expanded to combine forces with Bethany’s Hope to bring greater strength to both organizations.
Action to Take on Rare Disease Day
My hope is for the Rare Disease Day to result in greater awareness that leads to concrete action and tangible outcomes.
My wish is for more people to make charitable donations to rare diseases and the foundations charged to combat them.
My dream is for my children to look back on the progress by the medical community on MLD with comfort that the gene they carry will not result in horror to coming generations of our family.
I will close with a list of options for you to take on Rare Disease Day and with gratitude for taking the time learn more about the subject.
- Buy one or more of the Hailey’s Dreams Princess books. The Princess of Freddy Beach is great inspiration for how a community can stand behind a family battling a rare disease. Princess Pinch Me is a beautiful children’s story of compassion told through the eyes of a seven-year-old. All proceeds from the books go to the Hailey’s Dreams Foundation
- Donate to Hailey’s Dreams through this website. You can select multiples of $25 to total the amount of your choice.
- Donate to the Hailey’s Dreams Foundation in any amount of you choosing and learn more about Hailey on the official website.
- Follow Hailey's Dreams on Facebook or check out our Princess Books page on Facebook and author on Twitter.
- Donate to Bethany’s Hope Foundation to help further the research for MLD.
- Donate to Amyloidosis Foundation.
- Donate to any of Rare Disease Day, CORD or NORD.
- Say thanks to the organizers of the Rare Disease Day for their efforts and accomplishments by sharing their video http://youtu.be/zQIeiQ7S6tQ
- Say thanks to ABC News for their coverage and Dr. Richard Besser for sharing with his followers on Twitter #abcdrbchat @ABC and @DrRichardBesser
- Tell us if you find other ways to help people battling a rare disease.
Moments that Matter – Big and Small December 14 2014
The art of living in the moment can in part be deemed by taking a moment to reflect on the good things that have taken place. Today we look back to the book launch of the Hailey’s Dreams Princess Books celebrated with a Royal Scavenger Hunt.
It was a mix of fun (on a bitterly cold December day) incorporating the spirit of Hailey’s list of 32 life dreams. Guests scoured the City of Fredericton gathering clues about Hailey’s dreams to win prices, going to an author reading, watching a featured video, getting a royal makeover and kids popping their heads into a stand to have their picture taken in the royal scene – all wrapped into the thrill of a royal tea party.
What of the books and Hailey’s on going dreams?
Hailey’s dreams are moments to be shared and treasured. Amid tears, laughter, and dogged persistence with a tribe of supporters, all but one dream has come true. With the risk waiver required for riding in hot air balloons, it is likely that this dream will remain outstanding. When the opportunity presented itself for me to ride in a tethered balloon this fall, I took it as a must-do as a tribute to the single remaining dream for Hailey. There is much to reflect on from the inspiration of Hailey’s dreams. Having the stories on paper and beautifully illustrated helps to give us a glimpse into the insatiable spirit and zest for like that Hailey has. It is indeed a story of inspiration. It’s a reminder to think big. It’s a reminder that small things can have a big impact.
For Hailey’s parents, publishing the books was important to convey their appreciation for the overwhelming support that came from so many, on so many levels. Hearing about the seemingly endless kindness was an instigating motivation for me to find a way to tell the stories.
The books also serve as a means of raising some funds for the foundation set up for Hailey and to bring awareness to the MLD (Metachromatic Leukodystrophy) disease.
More than anything, the books are meant to share Hailey’s heartwarming story and collective acts of kindness.
What is the toll of MLD on Hailey now?
Earlier in the year it became necessary for Hailey to have a feeding tube put into her stomach. The progression of MLD seemed to be reaching an alarming stage. Some may have understandably viewed the feeding tube as a bad indication. I know I did, not knowing much about the benefits. Certainly it carried something of an emotional weight. In truth, the feeding tube eased a great burden of getting Hailey the nutrition that she needed. While she had lost most of her ability to chew, she was still able nibble on the foods she liked but with the worry of daily nutrition removed.
There have been many months of relative stability since then. The family has maintained an active life, albeit modified to Hailey’s physical limitations. There have been many joyous moments beyond the 32 dreams, not the least of which was traveling to Ottawa for Hailey to be the flower girl at her Aunt Becky’s wedding on Easter weekend.
How do they keep active?
Hailey’s parents are champions of maintaining an active life as a means of creating happy moments and in keeping a healthy perspective on the realities of restricted mobility. The challenges of getting around, including going to routine doctor appointments, were eased in May when they received a used wheelchair accessible van through a dear friend.
They carried on through the summer with the enjoyment of swimming. Hailey returned again to the animal camp which you will know from reading the Hailey’s Dreams Princess Books is one of her favourite things.
How is Hailey included at school?
School routine ranks high on the priority list of keeping a balanced life. Hailey loves being around people. The principal at her school will tell you, “Hailey is like family to us.” The teachers and students are very protective of Hailey and care deeply for her.
In the early days when Hailey was losing her mobility, the school had to rearrange classrooms to get around the issues of the older building that did not accommodate disabilities. They quickly installed a make-shift ramp as a temporary solution. The ramp, by the way, opened the possibility on a broader scale for other community members with restricted mobility to enjoy coming to the school for such things as Christmas concerts.
In the long-term, they needed an investment from the government to live up to their commitment to make all schools accessible. Next month Hailey’s school will receive a much needed installation of a wheelchair accessible elevator. That’s a moment all involved are anxiously awaiting.
As a side note, Together We Rock is an organization with some great informational tools for the promotion of inclusion and accessibility for people with disabilities. http://togetherwerock.com/
What is next for Hailey?
Recent weeks have brought new worries with Hailey as she contracted some form a flu virus and setting her back to a certain extent. Hailey’s inability to talk complicates the ability of her caregivers to know what is needed and even whether she might be making a turn for the worse. As much as we might will it all away, the reality of taking each day as it comes remains a constant.
That said, plans are made to escape the winter woes with a trip south in March. Looking forward to precious moments can be as beneficial as savouring the day-to-day and reflecting back on treasured moments. I treasure the moment I heard Hailey laugh when I showed her the illustrations in Princess Pinch Me and as I read part of it to her at the book launch. And, too, I treasured seeing a picture of the moment Hailey’s best friend read to her about the dreams they shared together.
Your kindness toward Hailey and her family carries great value. Thank you for every moment of that you do and have done.
Celebration of Dreams November 21 2014
As we approach the first anniversary of publishing the Hailey’s Dream Princess Books, there is no better way to celebrate than with an event…or two. Look for us at booth 52 at Bookapalooza Saturday, Nov. 22, 2014 between 10:00 a.m. and 4:00 p.m.
Lessons of Compassion and Inclusion from Kids October 04 2014The song Dream On Hailey was written by the music teacher at Park Street school in Fredericton. It is not the school where Hailey goes, as you might think. The fact that Hailey is not even a student there makes the act that much more kind in my view. You can tell these children had fun singing to Hailey. It didn’t matter whether they all knew her.All that matter was their compassion and desire for inclusion.
VOTE Daily for Hailey - to win a VAN April 25 2014
We have an exciting opportunity to help Hailey win a specialized van to help her get around. We will need many thousands of votes so please spread this message to as many friends as possible. Each of us can vote every day until May 9.
What preceded this broad smile on Hailey's face and gleeful moment shared with her brother was a challenge by her parents to transfer Hailey from her wheelchair, a clunky struggle to fold the chair and then lift their daughter in and out of the family vehicle without bumping anyone's head in the process.
Imagine the difference it would make with the automation of motorized access to a van without a physical strain. Imagine further if it was as simple as you and me and all of our friends voting for Hailey in an online contest to fix this one challenge for the Fitzgerald family. Are you in?!
1. Get started: click the link ---> http://www.mobilityawarenessmonth.com/entrant/hailey-fitzgerald-fredericton-nb/
2. Set-up your user name
3. Get your password from an automated email
4. Login with the assigned email
5. Place your vote
6. Repeat steps 4 and 5 DAILY
Library Sharing April 03 2014
Thanks to many thoughtful souls making donations, the Hailey’s Dreams Princess Books are popping up at libraries in communities across Canada. We’ve started to compile a list here. If there are others (and I know there are), please let us know and we’ll keep adding more.
Order a book-set or either of Princess Pinch Me or The Princess of Freddy Beach individually and add a second book or set to donate to the library of your choosing. Go to the Catalog page to order: http://haileys-dreams-book-set.myshopify.com/collections/all
Fredericton Public Library
12 Carleton St
Garden Creek Elementary
1360 Woodstock Rd
Nashwaaksis Middle School (also Public)
324 Fulton Avenue
Pickering Public Library
One The Esplanade
Frenchman's Bay Public School
920 Oklahoma Dr
Windsor Public Library
850 Ouellette Ave
Highbush Public School
605 Stroud's Lane
Pickering High School
180 Church Street North
Congratulations to the winning Valentine Star February 26 2014Allow me to introduce you to Star “JuJu”! Now joining “Hailey’s Dream” star in the Ursa Major constellation, JuJu has been named after Judith Marie Nobles who died unexpectedly in 2007. Much loved by her niece, Sara McCoombs chose to honour her aunt as the winner of our Valentine Star Naming Gift contest. Sara tells us Judy was like a second mother to her and her brother and only beloved sister to Sara's mother. It’s a privilege to award Sara with this gift. Here’s where you can find the new JuJu star https://stars.osr.org/JuJu
Valentine Star Naming Gift February 02 2014
“Don’t you wish everyday could be Valentine’s Day, Hailey?” That was the sentiment expressed by a boy in Hailey’s grade two class on Valentine’s Day last year. Valentine’s creates a perfect opportunity for such bursts of enthusiasm and expressions from the heart.
The Valentine Star Naming contest offers a chance to create an extraordinary gesture from, or should I say for, your heart of hearts. At the same time, you can connect with the beautiful gestures expressed by many other kind souls to grant Hailey her wish to have a star named after her.
The winner of the Star Contest will name a star after someone special to them in the same constellation as a star named after Hailey. You can check out the Catalog page to enter the contest or simply purchase one of the Hailey’s Dreams Princess Books before Feb. 14, 2014. If the number of entries skyrockets, we’ll add a second draw on Valentine’s Day!
The prize comes with a personalized Valentine card and certificate with the star coordinates, along with a revolving star chart.
To have a star named after me was one of the dreams Hailey listed as a wish to come true during her lifetime. It was such a precious idea that two groups independently went ahead to make it come true for her.
We were so moved by the heartfelt initiatives that we worked it into the ending of Princess Pinch Me. You can also read about Valentine’s Day with Hailey and fictional character, Elisabeth, at school. We took some inspiration from the young boy in Hailey’s actual school who was so enthused about the Valentine’s celebration. We also added some antics from another fictional character, Jeremy. The Princess of Freddy Beach reveals the background that inspired Jeremy’s character.
Thanks for your interest in Hailey and for sharing her dreams. If you would like to share this Valentine Star contest with others special to you, please pass on this flyer: http://bit.ly/1ega7tQ All proceeds go to the Hailey's Dreams foundation
Here’s an excerpt from Princess Pinch Me:
Valentine’s was different, because we had a special lunch. Some of our mothers came into the classroom with dishes of food and lots of cookies and decorated cupcakes.
Hailey and I went to her Nana’s house the week before to make Valentine cards to have ready for all the kids in our class. She has a room in her house that is just for making cards.
It’s full of special stamps, cut-out shapes, rows of ribbons, and more colours of paper than there are in a rainbow.
I helped Hailey hand out her cards. She had started using a wheelchair at school after she had come back from Florida. It was easy to push.
“Here comes the Valentine express,” I said as we started our spin around the classroom.
“Special delivery,” I said to the first boy on our route. He was one of our friends who always picked Hailey in gym class when we played in teams.
“Don’t you wish every day was Valentine’s Day, Hailey?” he said when he took his card and handed her one.
When we came to Jeremy we were ready with a joke. The card Hailey made had a cupcake shape glued onto it with candy shapes that spelled H-A-P-P-Y in front of the word Valentine’s. Inside it said, May all your candy wishes come true on Valentine’s Day.
“What do you have for lunch today, Jeremy?” I asked him.
“Bah!” he said.
Then Hailey handed him the card she’d made. “Got any cupcakes?”
“Pff!” he said. “Got any raisin cookies, Hailey?” He answered back with a question and handed her a cookie tied with a pink ribbon and a small heart-shaped card attached.
“Hardy-har-har!” she said, laughing.
Family Literacy Day - Library donation January 28 2014
For the next 5 Hailey's Dreams Princess Books or book sets ordered between Jan. 28 and Feb 1, we will donate a book or book set to the library of your choosing in honour of Family Literacy Day.
Hailey's story reminds us of the importance family including both immediate family and connections the community. The Fitzgerald family teaches us the value of sharing in joy and sorrow. Their story also underscores the importance of caring for each other as a way of enriching our lives.
Enjoy Family Literacy Day!
CONGRATULATIONS TO THE WINNER OF THE WESTJET TICKETS December 25 2013
Congratulations to Joselyn Delahunt from Nova Scotia for winning the WestJet ticket for two people! Thanks for your orders of so many of the Hailey's Dreams Princess Books. Have fun selecting your destination and Merry Christmas!
Thanks to all who purchased books and made donations. We have some of the original print run of books for any additional copies anyone would like to order.
All the best for the holiday and Happy New Year!
How to Play The Royal Scavenger Hunt ONLINE December 13 2013
For those of you interested in playing along in The Royal Scavenger Hunt, in celebration of the release of the Hailey's Dreams Princess Books, you can answer the clues on this survey.
Please note that you will need your order number for any book purchases or donation to qualify for the draw of the WestJet tickets for two.
Follow the link for clues about Hailey and enjoy learning about her story: https://www.surveymonkey.com/s/DP5R97R
List of Clues for The Royal Scavenger Hunt December 12 2013Download the list of clues for The Royal Scavenger Hunt: http://bit.ly/1bAUeKA for a bonus chance to win WestJet tickets with your book purchase.
The Royal Scavenger Hunt & Tea Party December 04 2013Join us for the Royal Scavenger Hunt on Saturday, Dec. 14. Search for clues through the Freddy Beach Kingdom and join us at the Tea Party at 2:00 p.m. for prizes, book readings of the Hailey's Dreams Princess Books, meet Hailey, take your picture with a princess, princess make-overs for kids and guest speakers.
Book Trailers & First Review November 26 2013Our Dec 14 release day is fast approaching. Book trailers for each of the two Hailey’s Dreams Princess Books now on YouTube. Plus the first Goodreads.com reviews.
Meet the Illustrator November 02 2013Allow me to introduce you to Emma FitzGerald, artist extraordinaire. I was introduced by Emma through our editor, Penelope Jackson, who described Emma’s work as very Quentin Blake-ish. I was instantly enamoured by her work and keen to learn who Quentin Blake was aside from being an acknowledged influence on Emma’s style. Think Roald Dahl, author of Charlie and the Chocolate Factory, now think of the illustrator of his books and you’re there.
Do you prefer to pay offline? October 31 2013
Not everyone is comfortable paying for items over the internet. If you share that concern but yet you would like to order one or both of the Princess books, please send an e-mail to HaileysDreams at BeNovel.ca. Make sure to specify which book(s) you would like and how many. You will receive an invoice with specifics on where to send a cheque.
The first print edition of the Hailey's Dreams Princess books will be limited. By sending an email, we will be sure to count you in. Otherwise we will have to guess at the number to print - a bit like guessing how much Halloween candy is the right amount. We're trying to avoid having egg on our face!
You Lift Me Up October 26 2013
Today is a significant day! It’s hard to tell by looking out my window at the steady rain and gusts of wind blowing the leaves around that there might be something celebratory to talk about. I hope to bring a ray of sunshine with the news that the two Hailey’s Dreams books are now for sale with the christening of this new website.