I am the mother of a living child….seems like an obvious statement, but it’s one that I consciously remind myself of whenever I am feeling down.
My daughter breathes in life, her eyes sparkle and widen to sounds that interest her and she can still coo and sigh loudly when she is happy. Small actions that have an insurmountable value to me. When I lie next to her, her soft sweet breaths caress my face and bring me to a place of pure joy.
Sometimes the madness that surrounds my daughter can push these precious moments and actions out of mind, it is then that I feel despair creeping in. A lot of our time lately has been focussed on trying to find services to help with our daughter and working out hiccups in getting her the proper medical equipment. In accomplishing these goals we find ourselves constantly explaining to others that we are the parents of a dying child.
A week ago Stephen and I got to take part in the Hunter’s Hope symposium for families of children with Krabbe and other Leukodystrophies. Present were parents of children like Lauren, parents of Angels (those lost to the disease), grandparents and siblings. The children we met were literally the most beautiful and precious that one could ever lay eyes on. I was amazed how like Lauren these children all had beautiful eyes that were framed with the longest lashes. It was the first time since the diagnosis that the noise around us stopped, time felt suspended as we shared our stories with the only people in the world who really got us – who understood our pain and our passion in ensuring that our children live life. I can’t tell you how amazing it was to be able to meet with other parents and feel an instant connection and bond. Although we were only at the symposium for just under five days, I am confident that the connections made will last forever.
The experience was gut-wrenching at times, to see children who are more advanced in the disease than Lauren and to speak with parents of Angels who had already passed to heaven was hard. To witness their strength and resilience is gift that I will hold dear throughout this journey. To see the efforts that have been made to protect other parents and children though Newborn screening and the foundations that parents have started in support of research is amazing.
Leaving our new friends last Sunday was hard but I feel like the experience has given us renewed energy, energy that we need to keep going, ensuring that Lauren lives life to the best of her abilities and beyond… After all our daughter is a living child!
To learn more about Newborn screening or to order a screening kit for yourself or an expectant friend (good internationally) check out the following link.
Hunter’s Hope Foundation – Newborn screening
One of Lauren’s new best friends Elias showed her how much he liked to use an iPad to make patterns and music. We recently tried it out with Lauren and it was a hit!
Lauren playing with her iPad
Click here to launch the video in youtube
Thank you Hunter’s Hope for the wonderful experience! Here are some pictures from the event.
Lauren’s Krabbe brothers and sisters
Go Team Trevor!
Team Trevor – Steve, Nicole, Tyler and Trevor
Meet Trevor and his family, Trevor is super handsome and will be four years old in November. Check out the Peace, Love and Trevor foundation here
Parents of an Angel with a Legacy
Christina and Drake, Parents of an Angel
Christina and Drake enjoy some close time with our Lauren, please check out their foundations page Judson’s Legacy here
Spending some time with Marshall
Marshall and Me hanging out at the symposium
You may remember this handsome gentleman from earlier posts in December. Marshall and his family were the first Krabbe family that Stephen and I had ever met. They had two sons who were affected by Krabbe disease, the youngest Michael was able to get a transplant and is running around causing trouble like any other toddler today – proof that Newborn screening can save lives! Check out Marshall’s website, Marshall’s Mob here
Kenan and Lauren meet for the first time!
Kenan and Lauren hanging out at the Hunter J Kelly research institute
This very handsome young man is Kenan, Lauren was smitten from the second that they met! Kenan is only one month younger than Lauren and obviously super cute. You can check Kenan’s blog here
The Kelly’s Continue to build hope for our children
Stephen, Lauren and I with Jill & Jim Kelly – YAY!
Jill and Jim Kelly’s son Hunter is the reason that we were able to meet all the wonderful families that we did. Their son Hunter in an angel to Krabbe disease and they honour his memory through their foundation Hunter’s Hope. Providing support to families and funding continued research for a cure. Thank you so much to them – please check out Hunter’s Hope here
Kenan, Lauren and Elias – Friends forever! xoxo oh and Tamsen of course!
The trio all sporting some sweet converse kicks 🙂 I think that they are ready to talk sponsorship deals, so let the offers roll in Converse 🙂 Elias who is on the right is Lauren’s friend who showed her how to use the iPad.
Mommy and Daddy with Lauren
Balloon release, our prayers and messages being sent to heaven – a very moving moment
Living Angels – check our Lauren and Trevors matching halos
Saying goodbye – Kathleen and Lauren say goodbye at the end of the week. Kathleen is the mother of Angel Jacquelyn “Jacque”. She is also the Family Support representative at Hunter’s Hope. She was our first contact at HH only days after we had found out about Lauren’s diagnosis.
Lauren all tuckered out from the week with her friends
lifewithlol 