She has had every available intervention to try to help regulate the seizures but it hasn't been enough to stop them or this disease from progressing, she has suffered 3 strokes, become wheel chair bound , suffered severe cortical vision blindness, lost the ability to eat and now lives with a feeding tube . One year ago, she had a full Spinal Fusion for severe scoliosis (from the 2 strokes ) which placed 24 screws in her back with 2 long rods and 29 screws in her pelvis .. this has left her with severe daily pain. Her inability to walk has caused her hips to dislocate and the muscles to atrophy, her dislocated left hip cannot be repaired surgically and due to her fragility she lives with constant pain.
Bella needs round the clock care. Leigh works as nurse, which she can only do part-time due to the commitment of caring for and bringing Bella to Duke University Hospital several days out of the month for doctor visits and treatments. The 300 mile round trip to Duke is a big expense in gas alone.
She has been traveling to Duke Childrens Hospital for 14 years weekly often and every 3 weeks 2 days in a row for ivig therapy .
48 trips to duke
2015 56 trips
2016 58 trips
2017 total unknown to date but has followed all previous years .
For 17 years, Leigh alone has made these these trips and Leigh alone has been the sole person to care for and take Bella to her appointments and stay with her for hospitalizations.
Leigh is an amazing mom with a deep faith in God, and all she wants is for her girls to be healthy and happy. She has incredible children who have endured more than anyone ever should. Molly is a beautiful little girl who offers a deep love and unwavering support to Bella and her mom---she has so much wisdom for an 8-year-old. Bella, needless to say, is one of the strongest and most loving young ladies you will ever meet. She continues to bravely fight every single day.
This situation has now reached a new level of crisis. For the past 5 mos Bella has battled several set backs and obstacles that come from a lifetime of chronic illness .. Bella is currently in intermediate ICU At Duke Children's hospital with Leigh and Molly during this holiday season ... A discharge date not looking to be anytime soon .
Leigh has daily responsibilities and bills like we all do but
chronic Illnesses like the one Bella battles does not take a break for holidays or take vacations .. it's constant .
With these numerous set backs happening and Bella's current hospitalization... with no relief in sight.... daily life has had to stop .. Leigh can't get to work , has to find help for Molly and still has bills to pay and mouths to feed. They are in a crisis situation and need our help.
Despite Leigh’s dire financial strain, she continues to ask only for prayers, however, I am asking all of you to please consider making a contribution to Bella's fund to help with medical and daily living expenses.
Absolutely any contribution is greatly appreciated. Thank you so much for your support and God bless.”
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