Crafts for Kindness - "Eli and Ella Prayer Warriors"

511 West Main Street,Trappe PA 19426

23 November, 2021

Description

Help us make no-sew blankets with "Eli and Ella Prayer Warriors". Please join us this month as we make no-sew blankets with "Eli and Ella Prayer Warriors". Becky Vivian is a local mom of 4. Two of her children, Eli and Ella , have been diagnosed with metachromatic leukodystrophy disease. Metachromatic Leukodystrophy (MLD) is a rare genetic disease that involves degeneration of the white matter of the brain and central nervous system. There are treatments for the disease, but no cure yet. Ella Vivian (13) is making blankets for a scholarship to help give back to a community that has been overwhelmingly supportive since being diagnosed 9 years ago. Along with selling blankets for the scholarship, Ella is also making blankets for her MLD friends who live all over the world. Her idea is that it might brighten their day to get a blanket "covered in love" by Ella. 💛💙 Eli and Ella’s Battle with MLD Becky and Steve Vivian have four beautiful children – Eric, Evan, Eli and Ella, three princes and a princess. But theirs was not a fairytale story without a treacherous villain. Becky had noticed many signs that something was not right with her youngest boy Eli. She noticed thing like his little hand tremors, or that his gait was not the same as his brothers’. She did not have the medical expertise, but she had her motherly instincts, which told her that her son needed help. After what Becky refers to as a “roller-coaster ride of tests and doctors”, a blood and urine test finally confirmed Becky’s fears – that Eli was not well. In September 2012, after an MRI scan, Eli was diagnosed with a rare and fatal genetic disorder called Metachromatic Leukodystrophy (MLD). Receiving a diagnosis where the words “rare” and “fatal” was overwhelming, but the most devastating news came when they were told that then 7 year old Eli did not have many more years to live, and that there was a strong chance the other three Vivian kids might have the condition. After having the other three kids tested for MLD, the Vivian’s were heartbroken to learn that the youngest child, their only princess Ella who was only 4-years-old at the time, also has MLD. And so began the journey of Eli and Ella, fighting against the villainous MLD. Becky says her mission in life, regardless of what happens with her children, is to get the word out about this disease and the importance of genetic testing. In the juvenile form of MLD onset occurs between the age of 4 and adolescence, but progression of the disorder is slower than in the late infantile form, so affected individuals may survive for about 20 years after diagnosis. Eli and Ella have both been diagnosed with the juvenile form. Becky and Steve researched the options for MLD and discovered that treatment options for MLD are few. A bone marrow transplant is one option, but that requires immunosuppressant therapy and months of follow-up treatment. The other issue with bone marrow transplant is that the mortality rate is only at 50% and for the Vivians, the quality of life for their children is far more important than the quantity. Gene therapy, using the patients’ own genetically modified stem cells, is another option. Through the amazing support from family and friends, the Vivians learned about Gene Therapy, a clinical trial in Milan, Italy that is showing promising results in kids with MLD. One child who went through the therapy currently has no signs of the disease following treatment. Initially both kids were denied access to the trial due to them having Juvenile MLD. But the Vivians saw this as their only option and were not prepared to give up the fight. They went back to Milan, emailed the doctor, sent videos, letters from his teacher, and evaluations from neurologists on Eli and Ella’s clinical condition. They were finally granted an evaluation in February 2013 and doctors were impressed with how well they both were doing and were told that if Eli remained stable till April, he would probably be accepted. On May 1st Eli and Ella were accepted and the real journey began. The Vivians feel very blessed and fortunate to be in the program as so many do not get the opportunity. Eli was number 10 in the world to get this therapy for MLD and Ella, number 11. However, they are aware of the reality that it is still just a trial so a cure is not guaranteed, nor is there certainty that it will slow the progression of the disease. It has also been an emotionally draining journey. Being in a foreign country away from everything you know could break you pretty easily so the Vivians have had to pull every bit of strength they have from wherever they can find it and keep going. That is what they are doing on a daily basis. They shared their story with us in hopes to raise awareness about MLD and how it can be prevented or detected early through genetic testing. When you RSVP, please RSVP one per group. So, if you are coming with friends or family, please RSVP for 1, but let us know the number in your party when asked on the registration form. We have limited spacing, so it is important we know how many will be coming to help on this meaningful project. You will receive a confirmation for your registration at least 48 hours before the event. Please let us know if you cannot attend, so we may release your registration to someone on our waiting list. If you have any questions, please call us and leave a message at 484-854-1162, thanks!