£231.00Donated So Far
This page is to help us offset the expense that comes with caring for a child with long term medical conditions, help fund family days out and hopefully one day a trip so Tessa can meet other children with BAM syndrome.
Our beautiful daughter was born on Valentines day 2013 with an extremely rare condition known as BAM (Bosma Arhinia Microphthalmia) syndrome. This means she was born without a nose and with multiple eye conditions which cause some visual impairment. There are only a handful of babies like Tessa in the world.
It was a complete shock when she was born and due to concerns about her breathing she had surgery at 8 days old to give her a tracheostomy. She stayed in NICU for five weeks, for us, her parents (and the rest of her extended family) it was some of the hardest days of our lives. She was fed through a tube while in hospital but would eventually breastfeed. I have written about our 'Breastfeeding Journey' HERE.
To celebrate her first birthday I wrote a summary of her incredible first year which you can find HERE.
BAMS has many associated eye abnormalities and Tessa's eyes are very unusual. When she was eleven weeks old she had surgery to remove a dense cataract from her left eye in the hopes that she would then gain some vision in that eye. When the two hour surgery was almost complete another congenital condition called PHPV resulted in bleeding that was difficult to stop and in the fourth hour of surgery measures were taken that resulted in permanent blindness in that eye. Her right eye thankfully, despite an irregular, off centre pupil, is healthy with some vision.
It has been unbelievable and at times heartbreaking for us watching daughter go through this and knowing that it is really only the beginning of her story. She has overcome so much already. As she has grown, our brave, little girl has shown us how extraordinary she really is.
Tessa is 8 years old now. She is strong, determined, imaginative, funny and brave.
Although we are incredibly lucky to have an otherwise healthy, strong daughter, our lives are filled with hospital appointments and surgeries. Given the rarity of Tessa's condition, she attends Great Ormond Street Hospital in London where her team are designing a new kind nasal implant. And although her treatment and travel costs are covered by the NHS (National Health Service) The regular trips from Northern Ireland to London on top of the frequent two hour round trips to her consultants in Belfast all put a strain on our finances.
- Grainne Evans
- Campaign Owner
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