Her health complications were immediate and she spent 6 weeks in three different NICUs in Nashville, Tennessee.
This beautiful little trooper has been, and is, going through so much. A swallow study and bronchoscopy found that Fisher has Laryngomalacia, Tracheomalacia, a floppy voice box, and a floppy right brochial tube.
The biggest shock came in the form of a genetic test. Fisher was diagnosed with an extremely rare syndrome. It is called 2q37.1-3 deletion syndrome - according to experts, there are only around 300 cases known worldwide. This syndrome comes with a variety of ongoing and infinite complications and struggles for this strong little girl.
Currently, she needs four different types of therapy - physical, occupational, feeding, and developmental. Her low immunity also makes her incredibly susceptible and vulnerable to common illnesses.
She regularly sees a Gastroenterologist for her bowel issues, chronic reflux, and food intolerances; a Cardiologist for her heart; a Neurologist to monitor her seizure activity; a Haematologist/oncologist to monitor the nodule recently found on her adrenal gland; and finally, a Nephrologist for her kidneys, especially with the complications of her malrotated duplex kidney.
With the ongoing hospital stays, travel expenses, and doctors visits, funding has become a struggle. Thankfully, her Medical Aid has covered part of her expenses, but the family still needs to pay for the excess and make up the full amounts, which unfortunately, is quite a lot. Her mom, Anna, has taken on a second job, and her dad, Bobby, is doing as much as he can - in conjunction to being parents to three-year old Wells and, of course, baby Fisher.
With the help of family, friends, strangers, the community, and shared expressions of kindness and compassionate, I am hoping to help raise money to help cover current and future medical expenses for my best friend’s daughter.
In reality, a little really does go a long way. But, of course, not everyone can afford to donate. So healing energy, prayers, positive vibes and words of strength and support are also as good a currency.
Fisher’s mom currently has a blog documenting their journey, and it can be found here:
Please also share this if you can, we need to raise as much awareness for all the little sweethearts around the world who are living with this syndrome.
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