Wanita … How a younger sister sees MLD

FB_IMG_1452703205170 My name is Tarryn and my older sister Wanita was diagnosed with MLD in 2007. She was 16 and I was 14 when she passed away and passed in 2010 from juvenile MLD. I live in South Africa.

She was so loving and so caring. Wanita was a very friendly person who loved everybody she met. It was a very difficult time for me as she was my sister. I grew up with her and I loved her. From her being there all the time to her being gone in a matter of seconds it really took a lot out of me and even 5 years later I still battle to understand it and cope with it. It was a very emotional time for my family and I but one thing I’ll always cherish is the memories we got out of it and the laughs we shared together. Right to the very end she was a happy happy little girl. Even though she was in so much pain she always managed to give us a smile and a little giggle.

I use to find it very difficult to speak about her with other people and explain my feelings toward it. I always managed to break out into tears and be very sensitive about the subject, but as time went on I almost felt like I was just staying in that bad patch and bad place of feeling alone and constantly miserable. I knew if I carried on putting it in the back of my mind that things wouldn’t get better and that I wouldn’t be able to let go. I decided to start slowly and little by little I became ok with speaking about her and listening to stories that was remembered by my family. Although I must admit I still get choked up looking at pictures but I’ve realised that it’s ok it’s not that I’m staying in the past or I’m making myself sad it’s just my way of grieving and I take a bit longer than other people do.

FB_IMG_1452703247833 I miss her everyday and I often wonder what life would be like with an older sister and think of all the things we should have done together. I never got to gossip or go shopping or go to the movies, tell secrets and all the things other sisters get to do with each other.  But I now get to make sure that my other sisters get that kind of attention from me as an older sister to them I try to fill in the missing gaps that were left behind with me when Wanita left.

I still have my difficult days and days where all I do is sleep and cry and hold her teddy. But everyday I know it’s getting better and she’s in a better place in heaven where she’s watching down on me everyday and holding my hand as I take my journey alone in this big bad world.

I miss her with my whole heart but I don’t wish her back here as I know she’s in a better place and she’s happier than she’s ever been in her life

I love you Wita  ❤

New Year’s Reflections … and Highlights from December Meeting in Boston

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Happy New Year!  As we head out of the holiday season and into a new year, it is a time that we reflect on life, cherish family, and count our blessings for all that we hold close to our hearts. Holiday music has been playing everywhere you go for the past month; while I enjoy all of the holiday songs, one song in particular, “Grown-Up Christmas List”, profoundly speaks to me at this point in my life. The lyrics are:

“No more lives torn apart,

And wars would never start,

And time would heal all hearts.

And every one would have a friend,

And right would always win,

And love would never end

This is my grown-up Christmas list.

This is my only lifelong wish”

YES. With the commercialism of Christmas in today’s society, much of this gets lost in the shuffle. But for me, and for what my family has endured as a result of the devastating effects of MLD, my grown-up Christmas list goes far beyond gifts wrapped beautifully under a tree. For me, since MLD has been in our lives, the loss we and others have experienced glaringly exposes the lies of commercialized Christmas. Shiny presents under the tree do not address our hopes and dreams. What we want is life for our children, hope for future families receiving a diagnosis of MLD. My lifelong wish is to see a cure for MLD, so that no other child has to endure what my beautiful girl, Emily, has had to endure. So that the pain caused by MLD would be avoided, and so that families receiving an MLD diagnosis would not be faced with little to no options. Emily Pierce - 2014

A few weeks ago, in mid-December, I had the privilege of attending a meeting organized by Dean & Teryn Suhr (MLD Foundation) with Dr. Alessandra Biffi and Dr. Florian Eichler at Mass General Hospital in Boston, MA. I came away from the meeting feeling like I had received a grown-up Christmas gift…two leading doctors/researchers investing and caring for OUR children and OUR rare disease. It was encouraging and refreshing. The goal of the meeting was to lay groundwork for future interaction; to discuss initiatives and action plans to make progress. [Dr. Biffi is on the MLD Foundation’s Medical and Scientific Advisory Board]

There is much to be done. Dean and Teryn are behind the scenes, pushing for good communication between those involved. Their involvement is a personal agenda that bears the weight of all of our hearts, collectively. They ultimately are fighting the MLD battle on the front lines for all of us. Dr. Eichler has been involved over the last 18 months creating a clinical & research community for ALD (adrenoleukodystrophy) called ALDConnect. The registry and community they created is a good prototype for what we can create for MLD patients to help advance research. Dr. Biffi and Dr. Eichler discussed what type of information would be helpful to obtain from MLD families. A similar patient-powered registry for MLD is in the final stages of debug by MLD Foundation (as a result of a federal grant like ALDConnect) and will be rolled out shortly. We, as the MLD Family, will become ultimately responsible in ensuring the success of information collected. A collection of information is vital for researchers to use in searching for a cure for MLD. We, as families, hold the KEY TO INFORMATION that is beyond valuable. It is my hope that we can harness our information and use it to its greatest potential.

In addition, we discussed the idea of Centers of Excellence, and what that could look like for MLD families. There is a tremendous need for knowledgeable and highly qualified centers for MLD patients and their families. Too often, our local doctors do not have the expertise or knowledge to adequately support MLD patients. With the help of a Center of Excellence, families would receive specialized care at a center, with support given to local medical teams.

Teryn’s work with developing a Newborn Screening Test for MLD was discussed. At this point a pilot study is being planned. The hope is that a 2016 pilot study will prove the test is reliable and credible. This would be HUGE!

It is very exciting to have Dr. Biffi now in the U.S. working on behalf of MLD.  It is my hope that new interest will be sparked throughout the U.S. because of her presence here. As families who have been involved with Dr. Biffi’s gene therapy work in Italy have already experienced, I was greatly impressed by Dr. Biffi’s genuine concern for MLD and desire to make a difference. We, as MLD parents, obviously want to see research done on MLD because our children have been deeply affected by it. It is refreshing to see doctors with a heart for MLD born out of their own desire to make a difference.

At one point during our meeting we discussed the burden of responsiblity that many MLD families feel in paying it forward…helping others that will come after us even if our own children may not benefit. Dr. Biffi recognized that this has affected her very deeply in her own research and experience with MLD. She personally has experienced the selfless attitude of many families to do whatever it takes for the greater good, to make the world a better place in the future for MLD, even if we may not benefit immediately from it. I was touched by her emotion and recognition of the heart of MLD families as a whole.

Ultimately, I am encouraged. Things are happening for MLD, research is being done. Not as fast as I would like, but at least it is progress. Maybe, just maybe, our hope of a cure is coming….