My beatiful niece Leanora, passed away earlier this week. She was just 25 years old. The cause, Neurofibramatosis – but also the failure of several key institutions.
Leanora had regular checkups while she was a child for her condition, but when she left school she wsan’t transitioned into the adult system for checkups around this disease, so from the age of 16-24 the disease progressed unchecked.
Over the past year Leanora lost a lot of weight and had difficulty walking and doing things a 24/25 year old should find easy. Her regular doctor was on meternaity leave and 12 other doctors saw her in the interim, none of them including her regular doctor made the link between Neurofribramatosis and the potential cause of the symptoms she was displaying.
Finally one doctor referred her to The Royal Marsden Hospital, where a biopsy was perfomed. Sadly the prognosis was that Leanora had 6 months to live.
From there on in the medical agencies denied negligence, the benefits agency dragged their heels to award Leanora the benefits she was entitled to, and the council couldn’t seem to find suitable disabled access accommodation to house Leanora to help the situation, as her living conditions were not right for a person in that condition.
It just seems that when you are fighting against the odds in this society, some institions lack empathy, responsiveness, even competence, and in effect this makes the odds even less favourable.
Leanora died barely a week after her 25th birthday. When I visited my sister’s house where Leanora lived, the birthday balloons were still up as we struggled to console one another and come to terms with what has happened.
I will always remember Leanora as being the most affectionate niece I aver had, always kind and helpful, and a person who should have been afforded the chance to grow and develop. Our family will miss her greatly.