About the Tour
Ever wonder where all our fundraising money is going?
If you have helped Liam's Fund through the years, read the following emails to find out how YOU have made a difference.
On September 7, 2006, Children's Hospital invited Liam's Fund to tour the Operating Room and view all the equipment purchased by Liam's Fund.
The group got to see how the equipment is being used today.
Subject Line:The AMAZING tour and success of Liams Fund for Nuerosurgery
Dear Friends and Family,
I had the most wonderful experience Thursday night and was so touched by the power of it.
The most amazing thing happened.
Back in 1999/2000 I was introduced to 3 different families facing brain tumors, one family facing an aneurysm, another facing a malformation on the lower brain stem, another who was facing life with a shunt for hydrocephalus. This list of "diagnosis" goes on. We have since become the best of friends. Over the years more families have been introduced and added to our "little group." Not all of us have the same diagnosis. But all have had multiple brain surgeries. Our families share important events together. We celebrated the life of Grant at his passing. We have been at each others bedside during difficult times in the hospital. We have all become second families to each other. Recently we celebrated one of the kids going off to college.
When we met we all had one thing in common.
We wanted to fix things for our kids but were helpless.
None of us are rich in a monetary way.
Our child's illnesses and multiple hospitalizations have taken our extra incomes over the years.
But we were rich in a desire to do something.
To say thank you to the people who saved our children.
How do you thank a doctor for saving your child's life?
Last Thursday night we had a small reception followed by a tour of the operating room at our Children's Hospital.
Dr. Levy and Dr. Meltzer along with the clinic staff and operating room staff were our hosts.
Carol and the Foundation staff treated us like we were royalty.
We had a reception in Carly's Magical garden with great food and drink.
We put on gowns and hats and walked into the place that we so often have sent our kids into with out knowing what exactly was going to happen when they went in there.
Dr. Levy explained how he had all of the equipment that is used for Neurosurgery procedures brought into the room, but normally it wasn't that crowded.
He then went around to each piece of equipment and recited what it was used for, how often it was used and how easy it made his job.
He stated with each piece"...and Liam's fund bought us this set just last year, before this set we didn't have any."
"Liam's fund bought us this piece 2 years ago and before this we had a piece that was broken down."
"We use this set everyday, it allows us to provide a safe procedure because this is specifically designed for use on kids."
We had a chance to see a piece of equipment that was actually made by one of the grandparents of one of our kids. It's called a Layla bar.
We call it an Arnold Bar in honor of young Arnold, who like Liam has had multiple shunt revisions.
I stood there with tears in my eyes.
None of the equipment that was in that room was available when my son needed revision after revision after revision.
Every child who comes to that hospital now, who needs any type of brain surgery was going to have the best equipment available to them.
The parents of these future patients would never have to know what my family, our group of families, has gone through.
WE MADE A DIFFERENCE IN OUR KIDS LIFE AND THE LIFE OF EVERY CHILD WHO WOULD EVER NEED SURGERY AT RADY'S CHILDREN HOSPITAL AND HEALTH CENTER.
I happily reminded Michelle of a conversation we had at the beginning of our efforts.
Michelle wanted so desperately to help us.
I told her I wanted to improve the equipment used at the hospital.
She had an idea. She was training for a marathon.
She took the idea of Team in Training and applied it to our group.
The night before we held our very first "Team Liam Kick Off" she called me in a panic.
"What if nobody shows up"? "What if we only raise a hundred dollars?"
I remember telling her "then we have a hundred dollars more than we had the day before."
We have never had any large donations.
Our Team Liam efforts usually raise ten to twenty thousand each year.
Five dollars here, a hundred dollars there. All added up to make a difference.
I love our crazy little pasta party we hold each year. It isn't even about the money.
It's about all of us coming together to share a moment of health and happiness together.
Our kids sharing hope and strength together.
The siblings of our kids support each other through their shared experiences.
Our husbands/dads have a connection that few can really understand.
Grand parents who have seen their child suffer through the illness of their grandchild become surrogates for those of us who no longer have parents/grandparent s around.
We welcome new families with the bitter sweet that the introduction always brings.
Another family having multiple surgeries, and the hope that comes from seeing others who have risen to the occasion.
Over the years I have been asked "how do you do it?"
"How do you remain so strong with everything your family and your son have gone through?" The answer is simple. I have never been alone. This group and it's efforts are a POSITIVE. They are always moving me physically, mentally and emotionally to a positive place. It's not my strength, it's the strength I get from those I have surrounded myself with over the years. Selfish of me I know;)
I have been so touched by the success of the group. We have "won" on every level. We are truly richer. We are truly better. We are amazing in our accomplishment. We have kept our sanity and love and endured through the worst to have accomplished so much for our families, our group and our greater community. WOW! Thanks for letting me share that journey with you guys. Thanks to all of our families who have supported each of us the past few years. I am humbled by it all.
With great love, Joanie
AWESOME! AWESOME! AWESOME! This group is my connection to making me the
human being I want to grow up to be. Thursday nite was reconfirmation
of why I need to continue being a part of Liam's Fund. Thank you to
Carol, the doctors & staff who made it an incredible experience.
Thank you for arranging that OR tour. It was interesting,
fun, and exciting to see all the things Liam's Fund has purchased.
It makes us seem important!
My parents and I had a great time.
It was a once in a lifetime opportunity! We really really enjoyed it!
Thank you, thank you, thank you.
Darla, Guy and Savannah (Angel Grant too!)
I felt Dr. Levy's frustration upon finding an inventory of only a handful of clamps turn into gratitude as he proudly displayed the case of various vascular clamps. Alex and me were as happy as little clamps, to be a part of our small but mighty group that placed so many lifesaving pieces at their fingertips and into their skilled hands.
Now about the big things. MRI-CT diagnostic imaging machines.
Having a scanner inside the sterile operating room, is a timesaving first step and best safeguard against infection and prevention of multiple surgeries.
Thank you all for an empowering evening,
Terry and Alex
It was a great turn out last night. It was nice seeing all of you. Very
educational information. Dr. Levy did a great job presenting the information
so we regular folks can understand it. I speak for both physicians and
staff. You all are very important and we are blessed to be a part such a
wonderful group. Thank you for allowing my family and I to be part of your
family. Oh yes, thank you for helping me out w/ my little one. (Chanelli
Panelli) She practically slept through the night. She was exhausted.
Thanks for babysitting. I really appreciate it.
Have a wonderful weekend!