my soft spot

just a mom who plays hockey and knits

Wednesday, January 09, 2008

Please post widely, and give generously

This is written by my friend Jamie from our April 2000 bulletin board. When we heard about Emma's cancer, that was tragic enough. Shelli has had so much pain; please consider extending her family just a bit of grace. Thanks.

I am writing to you regarding a dear friend of mine whose story deserves to be heard. I have spent the past 4 years or so trying to get her story heard myself, but my voice is simply not loud enough. And then in the past year her story took such a tragic turn that I now turn to you, for help. Please.

I met my friend Shelli about 8 years ago in an online mom's group for those expecting children in April of 2000. Internet friendship! There is now a core group of 9 of us who started our friendship in that online group. We've seen each other through marriage issues, parenting issues, burying parents and unfortunately burying children. All long-distance. The friendship we have is a sisterhood. And we know how lucky we are to have found it.

Shelli's daughter Emma is now 7 years old. Emma was diagnosed with a rare form of cancer (neuroblastoma) at age 2 and has spent most of her life in and out of the hospital getting treatments and therapy. Happily, she is in remission now, although her immune system is still weakened and she receives therapy regularly. I have been out to visit Shelli numerous times in Nebraska (I'm in New York), beginning when Emma got sick. I've come to realize there are people in this world that are special, yet they never seem to get ahead. Because of Emma's astronomical hospital bills, Shelli and her husband Jeff never did get to purchase their own home, and the debt they faced during Emma's illness forced them to declare bankruptcy.

Shelli is an amazingly strong woman, very witty and smart, and an amazingly caring person. Shelli and Jeff had another child, Isabel - age 3, who is thankfully very healthy, and then a son Nathaniel in September of 2006. Nate was born with a congenital heart defect called Atrio Ventricular Septal Defect. This meant he had a hole in all four chambers of his heart. As if that wasn't upsetting enough, he was also missing a rib on each side and there was a portion of his ribs fused together, and his spine had some cracks in the vertebra. Life was uncertain unless Nate could get some much needed surgeries, but he needed to gain weight and strength before the doctor's felt he was able to go through the operations. To get to the point quickly, after a year and 3 months of surgeries, waiting for additional surgeries, and too many medical interventions to count, Nate finally succumbed to his disease on December 14, 2007. He had lived nearly his whole, short life in Omaha Children's Hospital. My last trip to Nebraska was in December, for Nate's funeral. There were 5 of us in attendance from our online mom's group. We came from New York, Connecticut, Alabama and Michigan to say goodbye to Nate and be there for our dear friend.

I'm writing to you because Shelli was not able to work at all during the past 15 months as she spent her days at the hospital. Jeff did not work in recent weeks (as you can imagine). They are amazing people who have just fallen on extremely unfair/hard times too often in the past 8 years. People have been very generous in making donations to them for bills and funeral expenses, but it has not been even close to enough. Most of the donations given prior to Nate's passing were used to fill their cars with gas to get them back and forth to the hospital, to keep their home running since neither of them could work, and to give their girls some sort of Christmas.

Shelli was writing to our small group of friends today and was feeling very frustrated that their old van had broken down on her way home from the hospital (she had taken Emma in to Omaha..an hour away..for some therapy) and would cost $600 to fix. That's $600 they don't have. As it is they still owe thousands simply for the funeral and headstone for Nate. She was not asking for a dime, but rather simply sharing her frustration in not being able to take Emma to her appointments in Omaha tomorrow.

Shelli comes from a small town outside of Omaha - Fremont, Nebraska. Her cousin has set up a donation page at themillers.sneakydave.com that all of us have donated to.

My goal is to get Shelli's story out there and see just how strong the power of people who want to help can be. People don't need to donate hundreds of dollars, but if everyone gave SOMETHING, it would be enough. The only way this can happen is if people know. Please, tell Shelli's story. Nate's story. Please.

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