Baby Fisher and 2q37.1-3 Deletion Syndrome

Beautiful little Fisher was due August 17th 2018. But she arrived 5 weeks early at 5lb 5oz on July 13th to greet her mom and dad, and big brother.
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:

https://thesweetestlittlefish.home.blog/

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.

Donations

  • Melissa Livingston 
    • 50 $ 
    • 9 mos
  • Sara Hinds 
    • 250 $ 
    • 11 mos
  • Kirstie Schwoeppe 
    • 50 $ 
    • 11 mos
  • Jay Morgan  
    • 100 $ 
    • 12 mos
  • Deborah Puls 
    • 100 $ 
    • 13 mos
See all

Organizer and beneficiary

Dani Van Zyl 
Organizer
Franklin, TN
Anna Brinker 
Beneficiary
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