Seanna | The Bubble Foundation
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Seanna

patient

Written by mum Charlotte:


Seanna is 5 years old and has been suffering with ongoing infections since she was 1 years old along with bowel issues. For years mum had battled doctors knowing there was something more than just an unlucky girl catching every infection going. We would have a cold but she would get pneumonia - the fact that minor illnesses would affect her so majorly mum knew something wasn’t right.

Constant hospital admissions due to Numerous skin infections, chest infections, so many antibiotics given in a short space of time, she would get so tired, one normal day out to other children would make her so tired she wouldn’t move off the sofa for a day or two afterwards to recover.

Seanna Sienna

Frequent infections

Seanna would also frequently have fungal infections. It wasn’t until she had an endoscopy to try to find the cause of her bowel issues doctors in Cardiff found her oesophagus was covered in fungal candida. Her blood tests showed she had low levels of fungal sepsis - this pushed immunology to send R15 gene panel tests off to Germany to determine the cause; within 3 weeks she had a diagnosis of STAT1 Gain of Function. This is a rare life limiting gene condition which causes a variety of serious issues to people who suffer with it and the only cure is a bone marrow transplant.

Transplant

Seanna is due to come up for her transplant in the next few weeks! She was meant to be in Newcastle for her central line today but things have been pushed back to the 13th march. But within a year of her diagnosis she has been scheduled for her bone marrow transplant to prevent this life limiting illness causing irreversible damage to her health. This transplant will give her a chance to live a full healthy life, as her parents we dread to think what would happen to her if this treatment wasn’t possible. In the meantime she is taking 6 different medications daily to prevent catching infections and to give her a chance to live a normal life while she awaits transplant.

Her hospital life is so normal to her as it’s all she’s ever known, she has said so many times that when she grows up she wants to be a nurse or doctor. as her mum never knowing if this would even be possible for her due to her condition - she will now get the chance of being able to live out her dreams once she’s her transplant