Specsavers Donegal Town are getting behind the Team Livie
Specsavers Donegal Town are getting behind the Team Livie campaign by donating all fees for the week from their new Optical Coherence Tomography (OCT) scanning technology. The scan is similar to an ultrasound, costs €20 and helps detect conditions such as glaucoma and macular degeneration (AMD) up to four years earlier than with standard testing procedures. The technology is of a standard usually found in hospital ophthalmology departments and has been particularly useful during the Covid 19 crisis in reducing unneccessary trips to hospital and in making fast diagnosis of eye disease. The team will be raising funds in store all week too and wearing pink on Friday July 31st to show support for this great campaign. Call 0749742686 to book an appointment in Donegal Town or 0749167040 for Letterkenny. You can also book appointments for vision or hearing appointments at www.specsavers.ie.
Team Livie are raising funds for the treatment and care of Olivia, their beautiful baby girl. Little Livie has been diagnosed with a rare and serious genetic neuromuscular condition called spinal muscular atrophy (SMA) type 1. SMA is caused by a gene deletion which results in deterioration of Livie’s nerve cells connecting her brain and spinal cord to her body’s muscles. There is no cure and Livie has its most severe type. Livie’s muscles used for activities such as crawling, walking, sitting up, moving her head, and even swallowing and breathing, are becoming progressively weaker and shrinking. Without any treatment, little Livie’s condition would continue to deteriorate and it would be unlikely that she would live past her 2nd birthday. Every child with SMA is different and little Livie’s future is very uncertain.
Treatment options for little Livie are very limited. The best hope for a better life for Livie is a once-off gene therapy called Zolgensma, which is currently only available in USA. It costs approximately US$2,100,000. Studies have shown that Zolgensma can substantially improve quality of life. Livie's antibody test qualifies her for the treatment. We are against the clock as Zolgensma is only available to children under the age of two years.
Livie has received her first dose of another treatment called Spinraza through a lumbar puncture in Ireland. Her family remain hopeful that Spinraza will prolong Livie’s life and allow Livie to gain a degree of head control and sit with extra support. Her parents have been advised that Livie will still need respiratory and feeding intervention to survive. She is already struggling with her breathing and coughing. She needs to wear an oxygen mask every night. This is very uncomfortable for Livie and she struggles to sleep with it. It is very unlikely that Livie will ever stand or walk.
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