Help support treatment for local child

[smibarines]

Lillian Grace Smith was born September 26, 2011. She is the youngest daughter of Ben and Kathleen Smith of Leonardtown and the baby sister of Eiljah and Abby.

In late February of this year, Kathleen noticed that Lily was not actively rolling over, had trouble holding herself upright, and was no longer grasping or reaching for her toys. Lily was admitted to Children's Hospital on March 7, 2012 due to the concerns with her loss of mobility and muscle control. After extensive metabolic, neurologic, and genetic testing it was determined that Lily has a rare, degenerative genetic disorder called Krabbe disease. Krabbe disease is a type of leukodystrophy. Specifically, the body is unable to make galactocerebrosidase (GALC) enzyme, a substance needed to make myelin, which protects nerve fibers. Without myelin brain cells die and nerves in the brain and other areas of the body do not work properly. Until recently, there was no known cure for Krabbe and much of the care was supportive. In infants with early onset Krabbe, like Lily, the average life expectancy is two years.

On March 19, 2012, Ben and Kathleen took Lily to see Dr. Maria Escolar at Children’s Hospital of Pittsburgh. Dr. Escolar is a leading researcher in leukodystrophies, especially Krabbe. After a thorough examination, Dr. Escolar determined that Lily’s disease had been caught early enough to try stem cell transplantation in the hopes of slowing the disease progression and preserving her remaining neurologic and motor function. While this is not curative, it will allow Lily to live and grow beyond the originally projected life expectancy.

Because of the risk involved with cord blood transplant, Kathleen and Lily will temporarily have to relocate to Pittsburgh. They have been told that a minimum of 180 days will be spent both admitted to and living near Children’s Hospital. Chemotherapy medications will be used to wipe out Lily’s immune system for 14 days prior to the transplant. During the time it takes her newly transplanted cells to take hold, it will be crucial to prevent any and all infection. Ben will be home during this time working and taking care of Elijah and Abby, along with family that live nearby. As you can imagine, this is going to be a very difficult road.

Financially, the travel, living expenses, medical expenses/equipment are daunting. In addition, Kathleen had to close her home daycare to be able to focus on Lily and so the family income has also been cut. Lily will require increasingly complex medical care including tube feedings, special adaptive equipment, and frequent trips to Children’s National Medical Center in DC once she is stable and back home.

The goal of fundraising efforts is to help decrease this financial burden so that Kathleen and Ben can focus on family during this very challenging time and provide the best care for Elijah, Abby, and Lily. It is important to the Smiths that Lily’s case be used to help further research on Krabbe disease via clinical trials and also to spread awareness on the importance of genetic testing prior to pregnancy and at birth. This very special family has not asked for anything but prayers for comfort for Lily and strength for their family. They are very humbled by all that is being done for them. Thanks in advance for your support, and stay tuned there are several events in the works and we will be sure to update everyone as they become finalized.

For those interested, donations can be made to:

"Lillian Grace Smith Fund" c/o PNC bank

Po Box 655

Leonardtown MD 20650 (or taken to PNC branch locations)

or at Lillian Grace Smith by Amy Howell - GoFundMe

You may also follow Lillian's progress at http://www.caringbridge.org/visit/LillianGraceSmith

The Smith family thanks the entire community for all the prayers and support.

[smibarines]

To learn more about Krabbe Disease and its effects, visit:

Krabbe Disease Information Page: National Institute of Neurological Disorders and Stroke (NINDS)

and

Hunter's Hope Foundation: Welcome to Hunters Hope!

[SoMDGirl42]

I have friends that lost their son to adrenoleukodystrophy (ALD). You might know the disease better by the movie "Lorenzo's Oil", which was based on a boy with this type leukodystrophy.

My thoughts and prayers are with this beautiful little baby and her family. I plan to follow her caring bridge page through treatment. God bless her and her family.

[LuckyMe143]

Words can not express how deeply sorry I am. No child should suffer like that. My thoughts and prayers go out to the family.

[smibarines]

Lily Grace is having surgury this morning to install a port in her chest for the chemo. Chemotherapy will begin this Friday and continue for 14 days to decrease her immune system so that her body will NOT reject the transplant. Please help this family, support them, and pray for sweet Baby Lily Grace.

[SoMDGirl42]

Originally Posted by smibarines

Lily Grace is having surgury this morning to install a port in her chest for the chemo. Chemotherapy will begin this Friday and continue for 14 days to decrease her immune system so that her body will reject the transplant. Please help this family, support them, and pray for sweet Baby Lily Grace.

I hope you meant so her body will accept the transplant.

Bless her heart.

[smibarines]

Originally Posted by SoMDGirl42

I hope you meant so her body will accept the transplant.

Bless her heart.

Yes, my mistake. I fixed it.

[smibarines]

Port is in and they are now doing a lumbar puncture (spinal tap).

[birdman]

Glad you posted this, the Smith family are good folks.

If anyone can afford to donate even a small amount, please do!

[smibarines]

Baby Lily is out of recovery and back in her hospital room. Still pretty drugged but enjoying being held by her Mommy. All ready to start the 14 days of chemo tomorrow morning.