Our beautiful daughter Emersyn Paige passed away from SMA Type 1 on April 7th,2009 at the age of 7 months old. This blog is dedicated to her life, legacy and spirit and our journey as a family through grief.

Sunday, May 30, 2010

Fundraising Update for Emersyn's Entourage!

Hi Everyone,

Here is a quick update on how Emersyn’s Entourage is doing. So far, we have 88 team members running/walking/rolling for Emersyn and have raised an impressive $3,020. WOW! We have already surpassed last year’s total of 82 team members. We cannot thank everyone enough for registering to be part of Emersyn's Entourage and for all of your hard work raising funds!

In addition to the amazing job everyone is doing registering for the run and collecting sponsors and pledges Jason and I have been blown away by all of the fantastic ideas that people have come up with to help our team reach our goal. We thought we would share a few of those ideas with everyone and let you know of the upcoming events that are scheduled. All proceeds raised at these events will go directly to supporting Emersyn’s Entourage and our goal of $10,000:

A huge thank-you to Michele Robinson and the Tournament Committee at the City of Brampton for organizing the “Emersyn’s Entourage Dodgeball Tournament”. The tournament is scheduled for Thursday, June 17th at the Terry Miller Recreation Centre in Brampton.

A big thank-you to Dean Porcellato for organizing a Tennis Charity Tournament for SMA in Emersyn’s Honour, the tournament is scheduled for June 11/12 at various Community Tennis Clubs across Mississauga.

Another big thank-you to Jennifer Irvine for organizing the “Karma Yoga Class for SMA” in honour of Emersyn, which is scheduled for Saturday June 12th at Kula Yoga Studio in Burlington, Ontario on 4031 Fairview Street from 5:30pm-6:30pm. To find out more about this amazing idea please go to

The Hall family is organizing a charity book sale in June (gently used books). Great idea Sondra you guys are amazing! We will post the date, time and location soon, happy shopping everyone!

The Cottrell family has included our fundraising information in their adorable son Dylan’s birthday invitations. Dylan will be turning one on June 4th, Happy Birthday Dylan! Thank-you Belinda and Scott great idea!

If we have not mentioned an event or an idea that you are working on please let us know as we would love to share it with everyone on Emersyn’s Facebook page and blog!

The Rebecca Run for SMA is anticipating another sell out, as it did last year, so please register as soon as possible. In order to get a technical team shirt with our team name on the back you must register by June 10th. For event details and to register visit
www.rebeccarun.com please remember to indicate that you are walking/running/rolling for Emersyn’s Entourage! If you cannot attend the event, but want to help you can sponsor Jason or I by visiting www.runningroom.com and clicking on the “Giving” section and searching for Jason or Melanie Klomp under “Pledge an Athlete”.

For team and fundraising updates please visit Emersyn’s blog at
www.emersynpaige.blogspot.com. Please continue to keep us posted on your fundraising goals. Thank-you for helping us honour our daughter Emersyn's life, legacy and spirit and for helping to find a CURE for SMA!

Melanie, Jason and our angel Emersyn Paige Klomp

Sunday, May 23, 2010

A short note from another bereaved mom on grief.......

"Grief is distress of mind, body and soul causing me to feel both unlovable and unloving at the same time. In grief my mind is dulled, my thought process unclear and not functioning appropriately. I am physically worn down, unable to achieve realistic goals, and at times, even immobilized. And my soul is weary, fatigued from searching and seeking".
Written by another bereaved mother, Carol Pregent

Saturday, May 15, 2010

Amazing Custom Charm Bracelets- Proceeds go to GSF Towards a CURE for SMA!

You guys have to check out these amazing custom photograph charm bracelets that the Gwendolyn Strong Foundation is selling! The cost for each bracelet is only $45.99 and all proceeds go to the GSF towards a CURE for SMA! The dead line for orders is TODAY so click on the link below to check it out and order! A big thank-you to Tanya for making these amazing bracelets and to the GSF for promoting them. I am really looking forward to wearing my "heart on my sleeve"......

Click on the link below to see charm bracelet and find out how to order! The dead line is today May 15th, 2010 so you have to be fast!


Wednesday, May 12, 2010

Mourning and Fighting For a CURE

Jason and I have been rallying for a cure, fundraising and creating awareness for SMA since Emersyn was diagnosed and even more so after she passed away. Sometimes I think that we may come across as "ok" since we are both working now, fundraising and carrying on with the day to day tasks of living. The truth is that rallying for a cure for the disease that stole our beautiful daughter from us is something that we feel compelled to do as her parents but as grieving parents we actually have very little energy to do even the most basic of tasks. We want to do so much more with our ideas for our foundation but we feel like we are wearing a 500 pound back pack on our backs (aka grief) so we try to pace ourselves as we know the day when we are ready to launch The Emersyn Paige Foundation for SMA will come. It takes a great deal of energy and concentration to focus on anything when you have lost your child, at least that is how we feel and in speaking with many other bereaved parents is how they feel also.

We are still fragile, broken hearted, depressed and filled with "soul pain" as we mourn the loss of our daughter and this is our right and necessity if we have any hope of healing. Losing Emersyn is not a "sad story" or an isolated incident that we look back on and say "wow that was hard" it is a daily way of living that we struggle and wrestle with and will continue to cope with for the rest of our lives. We have not accepted Emersyn's death because that is not a natural choice any parent can just make. However, we have accepted that we will always live with the chronic pain of missing, loving and being separated from our child. We think about Emersyn and miss her every second of everyday at this point in our grief journey. Our grief is also a link to our child so it is a two edge sword....it is our connection with her and our curse all at the same time.

It takes tremendous energy just to live so for us and for other bereaved parents I just want to share that although we appear to be functioning "well" on the outside we are hurting terribly on the inside but we know that this is normal and dare I say even healthy and we don't need "fixed" we need to be allowed to be angry, sad, pissed off, happy, lonely and the list of complicated emotions goes on and on.....

We have tremendous support from our circle of close family and friends and we are beyond grateful. We have also been so touched and overwhelmed (in a good way!) by the amazing support of people who we have never met and those who we don't see all of the time but still continue to offer their support and understanding. We feel Emersyn comes through to us and connects with us through nature and other people. We seem to have an insatiable need in our grief to be validated, acknowledged and understood. We know that no one person can fill that hunger for understanding and comfort but somehow we keep searching. Sorry if we are wearing you out I know we are a big pain sometimes! (I really do mean that, I know how high maintenance we are) We have been very lucky to have a key group of people who go there with us time and time again, who keep calling, emailing, sending cards and we know that they will always be there for us as they know that this is a life long condition and we need that extra TLC.

Jay and I feel that we NEED and WANT to fight for a cure for SMA and we are honoured to do it and we don't want anymore beautiful children to lose their lives to this monster of a disease! We just want people to know that we are tired, extremely sad, we still cry everyday and we are devastated every time we wake up and realize that Emersyn's physical self is gone in this life. To be bereaved means to have "special needs" so a bereaved parent is a parent who has special emotional needs. This is not a "sad story" that we will move on from this is our tragic reality and 'new normal'. We know most people understand this but we just need to say it sometimes. Fighting for a cure, going back to work or looking "well" does not mean that we are not in pain. We are just trying our best to have reasons to live and honour our beautiful girl while at the same time fight for a cure for SMA so no more children and families will have to live with this pain.

Saturday, May 1, 2010

SMA Television Interview

Please watch "Real Life with Sharon Caddy" on Monday, May 3rd at 4:30pm EST on CTS TV as Margaret Wallis interviewed Theresa Van Fraassen from FSMAC and the Klomp family on SMA. The segment airs about 3/4's of the way through the one hour show at 36:45.