May is national Neurofibromatosis Awareness Month
May is national Neurofibromatosis Awareness Month. This is a disease that is near and dear to me and I couldn't think of a better way to spend my month than by bringing awareness to this disease and by helping to raise money for a good cause. As a Jamberry Nail Consultant, I am donating 50% of my monthly sales from May towards to the Children's Tumor Foundation- Ending NF through research. Please help me reach my goal of being able to donate $ 200 towards research to help find a cure and end NF.
For those who don't know what Jamberry Nails are, here is a little brief overview. Jamberry Nail wraps are the newest trend. They are a solid film coverings that are applied directly to nails and require no drying time! All you need is a source of heat and about 15 minutes for beautiful and stylish looking nails! There are over 300 designs to choose from and are made to last up to 2 weeks on your fingers and 4 weeks on your toes.
Around this time last year, my best friend received news from her sons doctor that would change their lives forever. They were told that their son would need to start 14 months of chemo treatments for his NF and in hopes of reducing the left optic nerve glioma. They were told that there was a 1/3 chance that the tumor would shrink.
"Kellan was diagnosed with Neurofibromatosis Type 1 at the age of 5 months old. He was born with an abdominal tumor that doctors couldn't identify, and developed multiple cafe au lait birthmark spots in the first few months of life. Our pediatrician referred us to a geneticist after Kellan’s 8 week check up due to increased presentation of the birthmarks. The specialist ordered a blood test that confirmed Kellan's diagnosis. Neurofibromatosis Type 1 is a genetic disorder where those diagnosed are lacking a tumor inhibiting gene in their DNA. It can be caused by both a spontaneous mutation of the gene set, as well as being passed from an affected parent. Neither Chris nor I are affected, leading Kellan's diagnosis to be described as a "lightning strike." The scope of the symptoms of NF1 varies greatly, from minor to severe. It affects approximately 1:3000 live births and can cause a wide scope of symptoms including small tumors under the skin called fibromas, optic pathway gliomas, seizures, headaches, skeletal abnormalities and the possibility for attention and learning deficits.
Kellan’s doctors decided to have the abdominal tumor, or plexiform neurofibroma removed when he was 7 months old. Since that time Kellan has been followed by a great team of doctors whom all work together to follow Kellan and his changes. Kellan began undergoing regular eye exams and sedated MRI's at 18 months old to monitor for optic pathway glioma tumors, which can cause changes or total loss of vision. Kellan was found to have a small left sided optic nerve glioma that has steadily grown with every bi-annual MRI. As of May 2014 Kellan's tumor had been found to grow so large that the team was concerned that it could lead to vision loss in both eyes, as well as the possibility for further complications with the vascular system of his brain.
In June 2014, the decision was made to begin a weekly chemotherapy regimen to attempt to shrink the tumor and prevent the onset of visual changes. Kellan had a subcutaneous chemo port placed on June 12th, and received his first chemo treatment on June 20th. The treatment regimen is set to continue weekly for 14 months or more with scheduled MRI's and monitoring to ensure the chemo is working.
Kellan is an active, happy, outgoing and fun little boy who loves cars, dancing, superheroes and meeting new people. We have come to a place in our journey that we are ready to reach out and provide updates, reach out for prayers and continue to give thanks for all the friends, family, community and groups that are supporting us and advocating for finding a cure for NF!"
Friday, May 1st, 12am
This is an online event.
To learn more about Jamberry nails and to place your order, please visit my website