United Leukodystrophy 2017 Conference

 

Melissa, her mom and caretaker were thrilled to have the opportunity to attend this years, ulf.org conference. Pictured are Dr Tanya Brown specialising in neuropsychology, Dr Marjo van der Knapp,professor of pediatric neurology at VU University Amsterdam and the VU University Medical Center, Dr Orna Elroy-Stein, Flora, holding Snowball’s Great Adventure. She is one of many parents at this conference. She son has VWM. Also,Dr. Orna Elroy-Stein is a Full professor at the Department of Cell Research and Immunology at the Faculty of Life Sciences, Tel Aviv University.

The conference was rich with informations.  Parents left with some hope that the research is moving forward. There were some great connections formed.

The Leukodystrophy community is small. There are little more than 200 cases currently worldwide.

Underfunded, this obscure rare disease need attention and funding.

Please take a moment and visit ulf.org to learn more about Vanishing White Matter Disease.

Neurology Now Magazine August 2017

Neurology Now, an official publication of the American Academy of Neurology (AAN), provides patients and their caregivers with credible, up-to-the-minute, balanced coverage of the latest advances in neurology research and treatment.

THE WAITING ROOM

TEACHING MOMENTS Melissa Robillard says writing a book about facing challenges—and reading it to kids was a dream come true.

READERS LIKE ME

Snowball’s Chance

Melissa Robillard wrote a children’s book that teaches kids about her rare disease and how to overcome obstacles.

Ever since I was little, I wanted to be a teacher. After I was diagnosed at age 5 with leukodystrophy, a rare neurologic disease that affects the central nervous system, that goal no longer seemed realistic.

[Leukodystrophy is progressive, and can cause problems with movement, vision, hearing, balance, ability to eat, memory, behavior, and thought.]

There are 50 types of leukodystrophy. I have what’s called vanishing white matter disease, which has progressed slowly. At first I had trouble walking and poor balance, so sometimes I would fall. Eventually my right side became weaker, and I wore a leg brace on my right leg. By middle school I needed braces for both legs, then added crutches to steady myself.

Success At School

I had an individualized education program, or IEP, throughout school, which allowed me to work at my own pace with extra support from my teachers. With the help of many dedicated teachers and therapists, I graduated from high school on time in 1997. After graduating, I went part-time to a community college, where I graduated with an associate’s degree in human services in 2006.

While I was a student, I volunteered at an independent living facility, first as a receptionist, then doing filing and data entry. After 16 years, I still work there with the help of my caregiver, Janine Sullivan, who is a dear friend of more than eight years. She helps me answer the phones and prompts me when I need help answering a question.

Now that I’m in the advanced stages of leukodystrophy, I am mostly in a wheelchair. I can still feed myself and get dressed with some assistance. The disease has also affected my short- term memory and my ability to find the right words.

CREATIVE THERAPY

A few years ago, my speech therapist, Kari Star, started thinking about new ways to stimulate my memory and improve my language skills. Knowing how much I like animals, she found stories about animals for me to read and pictures to look at. After reading and talking about animals, we began to craft our own story about a rare white lion named Snowball who lives in the Timbavati region of South Africa. With the help of her friends, she develops the courage to free a group of caged animals. Through bravery and teamwork, Snowball and her friends accomplish a seemingly impossible goal.

A METAPHOR FOR ME

Like Snowball, I’ve faced many obstacles and challenges, but with the kindness of many people and my own determination and hard work, I’ve managed to live a full and wonderful life. In fact, with help from Kari, Janine, and my mom, Kathy, I was able to develop my idea about Snowball into a children’s book called Snowball’s Great Adventure (bit.ly/SnowballsGreatAdventure) which was self-published in May 2016.

The book is now on the shelves of local libraries, and money from its sale has been donated to the United Leukodystrophy Foundation (ulf.org). What’s more, I’ve had the chance to read the story to children at several bookstores and childcare centers. I may not be able to teach in a classroom, but with my book I’m teaching others about this rare disease and how to stay positive in the face of it. I’m also teaching children how to read, which is a dream come true.”
As told to Paul Wynn

Links of interest:

http://journals.lww.com/neurologynow/pages/default.aspx

http://www.ulf.org

“I’m Content.” ~ A Mother’s Day Note

Melissa has been a busy bee this spring. She participated in a national walk to raise funds for leukodystrophy research.  Nationally over $9,000.00 was raised for this cause. It was a fun evening walking around the mall, racking up the miles for such a worthy event.

A couple of weeks ago she participated in the “Kentucky Derby” at the speech group she attends. That was a great deal of fun. The closeness of this group of people who have varying neurological concerns is impressive. Melissa enjoys being with them.

Just today she was out and about at various business looking for gifts for a fundraising raffle calendar she is working on with her mom for leukodystrophy research.  More about that soon. She really enjoyed popping into local businesses sharing her story.

While we were driving a lady was attempting to cross the street. She was holding one child in her arms, another by hand and two in toe. They all looked to be around the same age. I said, that looks like a busy mom.  She announced with firm confidence, “YOU DO REALIZE MOM WORKED VERY HARD TOO!” Referencing when she and her siblings where young.  I said, “yes I do and she still does.”  Melissa went on noting how hard her mom works and that she loves her very much, ending with,”She’s a rock.”  “She’s strong for everybody,” Melissa continued.

I was a bit surprised. This was all true but I wasn’t sure how aware she was. I said, “You don’t miss to much do you?” “No,” she giggled.

We sat down for lunch. She felt like one egg over medium, toast and bacon. We were served and she nibbled slowly while looking at the people come and go. She knew two people on our left and said hello. Then a couple leaving greated her. Another bite of toast and the waitress came by to see how she was doing. The day was busy and eventful, full of productivity.  I looked in the rear view mirror while driving home. She looked tired. I asked, “How are you doing boss?” She said,”I’m content.”

I wave of peace flowed over me as I looked at her gentle eyes.  I am content, I repeated to myself. What a wonderful example of how a person should be. Where she is there is no lack. Most of us find plenty lacking in the course of our day. It’s all good in Melissa’s view. She is simple and content. As I often say, if you want to learn something worth learning, hang out with Melissa for awhile.

The Work Continues

16508337_10210705789472443_8299958828900841440_nMelissa and her mom are busy thinking about ways to raise awareness and funds for VWM, Vanishing White Matter Disease.  Last week Melissa’s story was noted in the South East Center For Independent Living, newsletter. In April she will be in the national publication, Neurology Now Magazine.

February 28th is RARE DISEASE DAY.  Rare diseases are typically underfunded.  The research must continue. For the next two (2) weeks if you purchase Snowball’s Great Adventure 100% of the purchase will go to research. YES ~ you read correctly. 100%    If you have a book already GREAT. You can purchase one for your local LIBRARY, SCHOOL or DAYCARE CENTER.  There is nothing like a good book EXCEPT a GOOD CAUSE.  We have a {PAYPAL} button right here on this website.  Lets see if we can send some  big money / mucho dinero / beaucoup d’argent to Leukodystrophy Research. As always WE NEED YOUR HELP! 

When the innocent change the world.

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February 28th is Rare Disease Day.  Typically rare diseases are underfunded in the area of research.

What can be done when there is a clear need and attention is weak?  Simple. Average citizens step forward, rally courage and become a force of action.

This is very true of Melissa, her mom Kathy and Melissa’s PCA, Janine.  They have found their niche, their cause, their calling with in the leukodystrophy community.

What is amazing is the healing aspects of connecting with a group of families who are all struggling with similar issues.

When each family received the diagnosis that their child had some rare form of leukodystrophy and anguish gripped their heart, could they have imagined that it would be that child who would change the world?  Not just in their corner of the world. No the power these innocent children, young adults and adults with leukodystrophy have is nearly magical and certainly miraculous.

As family and friends draw near to develop a care plan that will last for years and change frequently as the disease progresses loved one’s actively seek ways to enhance the child’s well being.  This multi-layered process of constant education and research takes up a great deal of time.

Beyond the support of family, friends, and perhaps other leukodystrophy families the sweetness of these innocent children becomes the conduit for love and connection.

You cannot help but be touched deeply when you look into the eyes of these angels.  You become motivate to action.

I spoke to Melisssa this week.  I asked her how she felt about her new found connection with the leukodystrophy community.  She said she was enjoying it.  Although she can no longer recall all the details of an interaction she knows in her heart that she is connected to somethings that is extraordinary.

What happens when a connection of this nature occurs?  What happens when people who have never met one another join together to create change?  It seems clear to me.  First of all they lend to each other a level of support that is unique because of their life experience.  Secondly they set in motion action that is sure to create change.

As mentioned rare diseases are under funded in the area of research.  Currently there are great strides being made in leukodystrophy research in the area of genetics.  This is incredibly positive news for families dealing with progressive diseases.

Melissa wishes to challenge people even family and friends to educate themselves about leukodystrophy.  She told me the other day that she has often felt that people have not complete understood what this disease has done to her.  She felt people sometimes didn’t understand, as the disease robs parts of her brain she can not help the way her mind works or her body functions.

It is so important for all of us to pay attention to ways we can understand the process of a disease that takes lives.  One thing Melissa said that I thought was especially sweet and insightful was that her mom was her rock but she’s tired.  I said, “Melissa you don’t miss to much do you?”  She laughed.  Never underestimate what a person with leukodystrophy or any neurological disease perceives.

For as much as she is aware that she needs a great deal of help, she is very mindful that her caretakers need a hand from time to time.  The caretakers become burnt out with the demand required in getting through each day.

Melissa challenges us with her sweet persona to be more conscious of the scope of what the demand of  leukodystrophy means to everyone involved.

Team Snowball is still busy getting out in the community.  Melissa recently read her story to a room full of children at her local library.  Proceeds from the sale of Snowball’s Great Adventure is going directly to leukodystrophy research.

We hope you will consider purchasing a book or two for yourself or to donate to a school or library and help Melissa leave a legacy that involves find a cure for this rare disease, leukodystrophy.

There is a paypal button on this site.  We thank you for your time and continued support.

Team Snowball

 

 

 

 

 

 

I Hate You Never Sounded So Sweet

The other day during a lull in our conversation, Melissa said with great zeal, “Janine I love you.”  I am fortunate because she lets me know that fairly often.  She went on to say,”even when I say I hate you, deep inside I love you. You know that don’t you?”

I responded by saying, ” I don’t recall you ever saying that you hate me.”  She let on, “I think it sometimes.”

My heart melted into a pool of sweet joy.  I was filled with the sense that I was witnessing something very unusual, extraordinary really, honesty blended with pure love. You know what pure love is don’t you?  We’ve read about it in philosophy books and on the pages of spiritual text.

I was curious. My senses perk up when in the pressence of such wonder.  I said, “Melissa when is that you are thinking that you hate me?”  She said glancing up to the ceiling, “when you are pushing me.”  “Like when I am stretching you in the morning?”  “Yes,” she noted.

“Do you feel you hate me when I am making sure you wash your face or when I write out a sheet of math problems for you?”   “Yes.”

She continued on telling me that so much of what we do in the course of a week is frustratng.  What she means by that is it feels like hard work and it is.

Handwriting for example can be tricky business.  Those letters get jumbled.  Think about all the steps in writing the letter W. You have to think W. Then you have visualize, W. Then you have take your pen, place it in your hand properly, put the tip of the pen to the paper and begin to slide it along.  For Melissa, she places the pen  down then suddenly it is moving in a circle as if it had a mind of its own.  Beginning again an attempt is made to write a W.  Maybe you or I could jot down a W with great ease but for her, it can be challenge.

Then there are those dasterly stretches. You’ve been to the physcial therapy once or twice in your life, right? You know how brutal a stretch can be when your tendons are tight and her tendons are tight. It hurts but it has to be done otherwise they shrink and legs and arms curl up.

The clincher is when I come at her with the third ten ounce drink of the day. More fluids  Melissa, I exclaim. with a smile.   I can almost hear the “I hate you,” then.

We continued with our chat and she repeated, “you know I don’t hate you, right?”  I said, “Yep I know you don’t hate me. I know you love me. You know we’ve done good work for eight years, right?”  She agrees.

“I wouldn’t be in the shape I am in if we didn’t do all the work.” I acknowledge her insight.

I softly reply, “I know. I know it is hard frustrating work. I get it.”

She ends saying, ” Janine I love you.”

“I love you Melissa.”

If you know Melissa and have yet to read up on leukodystrophy I encourage you to do so. It would be a very long article for me to list all the aspects of this disease in the stage it is in currently.

Her mother and I are in the thick of it as primary caretakers.  No one aces it like mom by the way. I can only hope to reach that level of love and compassion, oh and sacrifce.  Kathy is a model of strength.

We have decided the mission of Melissa’s book Snowball’s Great Adventure and Team Snowball is to be of service to families dealing with children with leukodystrophy.  If you were to read some of the stories your heart would break over and over again.

Kathy, Melissa’s mom and I agree that the best way to honor Melissa’s own stretch and courage is to continue to be of service expanding our work in the direction of these families.

I ask family and friends to visit ulf.org the site of the United Leukodystropy Foundation or do a google search information.  Education has a way of clearing up misnomers.

One thing is for sure, the road is lighter when shared it together.  I have said it before and I will gladly repeat it one hundred times, Melissa is a master teacher to anyone who is receptive enough to see the message in her unique wisdom.

 

 

Is it about Me or Us?

Recently Melissa had lunch with her PCA, Janine and Janine’s friend.  It was the first time the friend had spent a decent amount of time with Melissa.

The welcomed guest later called Janine wanting to learn more about Melissa. She was intrigued by her bright eyes and soft demeanor.   Her curiousity lead to a conversation about Snowball’s Great Adventure.  You see the book has never been just a book. It has always been much more than a story of a rare white lion.  That is how things go when they are wrapped in magic.  Magic can happen in the most subtle of ways. Snowball and company have surely been wrapped in magic.

Evidence of this was first seen after a great deal of work creating the book had completed.  It was time for a speech therapy eveluation to see if Melissa was showing any progress.  One must show progress in order to continue such services.  Sure enough when asked the typical speech evaluation questions, Melissa indeed showed notable progress.

Kari Star the speech therapist reacted with much joy and a little surprise, “what has that little white lion done for you?”  Well, the answer to the question boarders on the profound.

Melissa had one answer. Her standard.  The answer has been consistant no matter who ask her what is the best part of writing a children’s book?  Simply state Melissa replies, “the book has brought people together.”

She certainly has seen alot of people since the book was published.  It was a full house at the book signing.  A story time at Partners Village Store in Westport was layered with happy pre-school children reacting with great enthusiasm to the reading by Melissa and Kari as well as Janine’s puppet show.

What is the point?

Melissa never ever thinks any of this is about her.  It has always been about family, friends and new people she meets along the way.   Another person may see something all together different but Melissa sees people coming together and that makes her happy.  We all see what we want to see.

The book has been published for seven months. So much has happened from a magical point of view.  Some people have gotten an education about leukodystrophy.  Others seeing Melissa in action learned more about where she is at.  For example, her writing is scratchy, her speech slow as she searches for words and her over all response to situations around her is delayed.  Her short term memory is very weak. Yet she would say, “that’s the way the cookies crisp crumbles.”  Some people may have been lucky enough to hear her  lion’s roar or a hardy giggles when someone says something goofy.  What have people seen in this unfolding adventure?

Melissa goes with the flow with a level of grace philosophers, sages and spiritualist wish they could capture.  She lives her days very simple, not holding on to much at all, rejoicing when she sees people she knows, falling to sleep at night thinking about many of them.

What can Melissa teach you if you dare to watch and learn, if you have the resilence to stand up to someone with such pure intent?  She can teach you that in this world if we are to succeed well, choices need to be more about ‘us’ and less about ‘me’.

That is what Janine shared with her friend who can be rather self absorbed, leaning to the miserable side of life and far to focused on herself to be a healthy individual.

What is the point?

I don’t really know except if you have a chance to sit down and chat with Melissa, and she only shares a few words, count them among the most treasured few words you’ll ever hear.  Even if all she says is, “I’ll have a cheese burger with ketchup”, she has spoken from her heart which is  a judgement free zone.  Can you say the same?

Maybe one of the pre-school children Melissa read to summed the message up the best, ” can I get a little closer?