Baby Fisher and 2q37.1-3 Deletion Syndrome
Donation protected
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.
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.
Organizer and beneficiary
Dani Van Zyl
Organizer
Franklin, TN
Anna Brinker
Beneficiary
