A Sad Day

I love my Sanfilippo family.  After almost 3 years of being in this exclusive circle, I have come to heavily rely on some of the other mothers who truly understand what I am going through.  I have found a few moms whom I can call or email when I have had a terrible day, when I need advice, when I need to vent or when I need someone to pick me up.  They are treasures.

Being a part of this group is difficult though.  New families enter.  As I hear their stories or read of their pain, I am immediately taken back to those first few months post diagnosis.  As I have grown attached to other families, I see the changes in their children.  I hurt right along with them as the disease progresses and new challenges are faced.  And I have also watched other families anticipate the end of their child's life and grieve with their loss.

Another family's precious little girl is nearing the end of her life.  Both she and her brother have Sanfilippo.  Their story mimics ours in so many ways.  I cannot help but look ahead a few years and know that I will soon be in those shoes.

I feel, at times, that I am in a waiting line; surrounded by other Sanfilippo families.  All of us waiting for our moment to lose our child.  Some families choose to avoid all contact with other families.  I understand that perspective.  I needed to reach out to other families.  The day after Waverly was diagnosed, I was on the phone with other moms.

I know that there are movements toward finding a cure for Sanfilippo.  We won the $250k grant to help fund gene therapy research.  But in all actuality, it is most likely too late for my children.  They will probably not benefit from the research.  They will be too old and the disease too advanced to enter the human trials.  This will not stop me from fighting for a cure.  I want to help other families not have to endure this pain.

My heart aches today though.  I hate knowing that another mother is cradling her dying baby girl.  I cannot even begin to imagine how much she is hurting right now.

I am scared of the day when it is my turn.  My turn to cradle Waverly & Oliver.  To know I have mere moments left with them.

Please keep Steffany and her family in your thoughts and prayers.


Linda van Leuven said…
You and your beautiful family are in my thoughts and prayers daily! Will light a candle tonight for Steffany a her family!! Lots of love coming your way from London.
Linda xx
Joanne Huff said…
Such a beautiful post, Shannon. All of these words were written like thoughts coming out of my own head. This disease is a tragedy of such great magnitude. It's a tragedy on a personal level and on a global level as well. Thank you for writing about this Thinking of Steffany and her family. Joanne
heidi said…
Oh Shannon, I am so glad that you share this stuff with us. I hope you know that many of us are touched by your story and as a result, touched by the other stories as well. Your sharing is creating awareness and making a difference.

I am so grateful that you found a group of people who understand your struggles and your pain. I can only imagine what it is like and, while painful for me to imagine, I'm sure it can't touch the reality and depth of your pain and sadness.

I am thinking of you and Steffany and her family, and quietly trying to help you hold your pain - probably like so many others who can't understand and don't know what else to do.
MK said…
I wish I knew what to say. I can promise to send prayers up for this family. It's so heartbreaking & so beyond unfair. Thank God you moms have found one another so you can lend support even if it's just a shoulder to cry on. I'm sure you all have a bond like no other. Since my nephew was diagnosed with Angelman Syndrome we have met the most amazing families with special needs children. I feel honored when I meet these fathers & mothers. AS is rare & 10 years ago few people knew of this syndrome, including doctors. I have seen the awareness of this syndrome grow enormously & I hope to see the same with Sanfilippo. I admire you for exploring Holland & finding the beauty it has to offer. I will help in spreading awareness. Thank you for opening up to me on the plane & teaching me about Sanfilippo & your beautiful children. I will be praying for your friends & the entire Sanfilippo community. God bless you all....~mk
Kate said…
Thinking of you in Columbus.
Nancy Burke said…
It is just so sad Shannon. Sometimes you wonder who will be next. Our hearts truly break whenever another beautiful, innocent child is lost to this disease. I, too, hope and pray for a cure but worry it will be too late. You are afraid to hope but you want to hope. Please give your sweet children a big hug from our family. Love to you!
Amber & Cliff said…
Thanks for praying for Steffany and her family. My mind has been with them too.

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