UPDATE : Many sites and online news have been sharing our story and we have noticed that some are misleading due to inaccurate reporting. This fund is NOT to cover medical expenses as all of Tessa's treatment is covered by our National Health Service (NHS). Our transfers to London are also covered although these trips do inevitably incur unseen costs. Any money raised will contribute to our day to day caring for Tessa like paying for fuel for regular hospital and speciaist appointments, providing special air filters for example to help do the job that a nose should by filtering allergens, irritants and bacteria. Providing family days out so Tessa and her siblings can enjoy normal family life. We would hope to purchace hypoallergenic matresses and bedding to protect her respiritory system further. We have plans to provide some garden shade so our little girl can enjoy playing outside without the sun hurting the eye which was operated on, leaving her retina exposed and extremely light sensitive. (Without a nose sunglasses are difficult) Due to the beautiful and generous response that our story has had, we will be making donations to two charities that have helped eased our journey over the last 18months: Changing Faces and Headlines.
This page is to help raise money for a very special little girl and to help us offset the expense that comes with long term medical treatment.
Our beautiful daughter was born on Valentines day with a rare congenital facial condition known as Arhinia. She was born without a nose. There are only a handful of babies like Tessa in the world.
It was a complete shock when she was born and led to breathing concerns as infants are obligate nasal breathers so she underwent surgery to give her a tracheostomy when she was just eight days old. 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.
Arhinia 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 showing very promising signs of age appropriate vision.
It has been an unbelievable and at times heartbreaking year for us watching our tiny baby 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, baby girl has shown us how extraordinary she really is. She is 17 months old now and has surpassed everyones expectations by meeting every milestone and stealing the hearts of everyone she meets.
Although we are incredibly lucky to have an otherwise healthy, strong daughter, our lives are filled with hospital appointments and medical check-ups. Given the rarity of Tessa's condition, she is being seen by surgeons at Great Ormond Street Hospital in London who are trying to come up with her options for the future. This means regular trips from Northern Ireland to London on top of the frequent two hour round trips to her consultants in Belfast. Our finances are being strained by fuel costs as well as all the additional expense of trips to England.
Tessa has her third assessment in GOSH in a few weeks (July 2014). Although our travel is paid for the financial implications of these trips is still significant.
We hope that, by asking people to donate to this fund, we can continue to seek out the best medical care without worrying about sinking into debt. Please if you can, consider donating so that we can make her life as full of happiness as she deserves it to be. There will be many more operations in Tessa's future, many more disruptions to family life and our little daughter must learn to face the world and it's people with confidence and inner strength. We have so much love for her but also so much worry and fear about what the world has in store for her and how she will be treated in it. By donating you will be helping to ensure that money is not an additional stress in our lives and we can concentrate on providing Tessa and her sister and brother (3 and 4 years old) as much normality as possible.
From the bottom of out hearts, thank you.