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Please help, support, and pray for Amelie!

AMELIE'S STORY ~

Amelie is a vibrant, gregariously affectionate 4-year-old girl.  Amiable, kind and full of life, she loves to swim and sing. Affectionately nicknamed "Lulu," she is happiest when surrounded by her friends and family.

When she was 3-years-old we discovered she has 22q11.2 Deletion Syndrome (22Q is a genetic condition where she was born with a micro-deletion of her 22q11.2 chromosome).  Because of her good health, intelligence, lively and determined spirit her doctors did not recognize it earlier. A speech delay was her only symptom.

After a surgery to repair her cleft palate and weekly speech, occupational and physical therapies, she continued to thrive and amaze everyone with her fiery spirit. Moving back to our home state emboldened her as even more friends and family surrounded her every day.

A few weeks ago something changed. Her spirit was dampened and she had no energy.  After two weeks of what appeared to be a stomach bug, she suffered a seizure in the emergency room. That night the doctors quickly diagnosed her with a malignant brain tumor. Several days and several procedures later, including a EVD to relieve the hydrocephalus in her brain and removal of the tumor, which was roughly the size of a golf ball, the doctors were able to definitively confirm she has a very rare, extremely aggressive type of cancer classified as Pineoblastoma. Quite unfortunately, it has also metastasized in her spine.

Brain tumors are the #1 cause of death in all childhood cancers. And Pineoblastoma brain tumors represent less than 0.1% of all childhood brain tumors.

Little Lulu will need aggressive treatment to combat this horrible disease. Radiation and chemotherapy administered concurrently, five days a week for six weeks (wherein she will have to be sedated every day), then a short break, followed by several months of maintenance chemotherapy during which she will be very closely monitored by the doctors and frequently hospitalized. She will likely need multiple blood transfusions, platelet transfusions, and a large array of procedures.  Unusually high doses of chemotherapy must be put into her tiny body.

She will lose all of her gorgeous curly hair and beautiful long eye lashes. She will be, at the very least, weak, nauseous, vomiting and tired. There will be times when we will have to keep her away from people, the thing she loves the most, as her immune system will be vulnerable to infection.  Our treating hospital has had only TWO OTHER KIDS undergo this same treatment plan, it's that intense. 

Even though It's going to be a hard battle, we will not waver in our commitment to our Lulu. Even during this horribly painful and traumatic time, she remains sweet, affectionate, kind, and cheerful. She loves visitors and attention and often cries when people leave her hospital room (aka, the ‘princess lulu room’).

There will be times when her spirit is dim, but we will never let it extinguish. It will take an army of "Amelie's Angels" to combat this horrible disease.

When Lulu was born, daddy took one look at her and said, "this girl has a fire inside her." We saw an indistinguishable fire burning brightly within her soul, a fire not even cancer can put out.
 

THANK YOU everyone. The outpouring of love has been almost overwhelmingly powerful. I can't begin to express my gratitude.

We are choosing to BELIEVE. Believe in miracles and the power of God.  We are beyond grateful to all of you. We will need help in the long run, but right now all we need is the Power of Prayer. Let's pray and BELIEVE in the LONG RUN.

ARMY OF AMELIE's ANGELS

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