Hazel Jo's Ehlers-Danlos Syndrome & Clubfoot Fund
Donation protected
My niece, Hazel Jo, was born with bilateral club foot. She has been getting casting once a week through naval Tricare since 2 weeks of age. During this time her casts have slipped 4 times and both her feet have since become complex. Because of the worsening of her condition, Lauren and Steve (her parents) have chosen to see a specialist, Dr. Dobbs. Dr. Dobbs is known for his interest in club feet and is where the Dobbs Bar, a brace for club feet, gets its name from. However he is located in Florida, and both Steve and Lauren are in the Navy stationed in Virginia. I’ve created this go fund me for a couple reasons.
First, for the travel and lodging to make this trip to Florida for Hazel. We have a referral for the quantum house near the hospital, and as of yesterday we have finally gotten approval for us to stay during the one month the castings and surgery should take during mid October through November. Hazel has already had 9 sets of casts and will need at least another 4. Next, she will need surgery on her Achilles tendons. Afterwards, Hazel will need to wear leg braces up to 4 years old. These braces will need to be replaced as she outgrows them. Replacements can cost up to $400.
Second, Dr. Dobbs is also known for his interest in genetic disorders. Hazel’s genetic test results came back today positive for Ehlers-Danlos syndrome (EDS). Hazel will need further bloodwork to decipher if she has classical EDS or Vascular Ehlers-Danlos syndrome (VEDS) (Type IV). She was born with it and will fight with this her whole life. Any additional funds will go towards any complications and surgeries Hazel will unfortunately likely face in her life. We have already noticed some difficulties including mild mitral valve regurgitation in her heart, bruising easily, and loose joints.
She is the toughest, sweetest little girl and we are thankful for any donations and for anyone willing to spread awareness of this extremely rare genetic disease.
I will attach a few links about Dr. Dobbs, Dobbs Brace, and Ehlers-Danlos syndrome and VEDS respectively.
https://paleyinstitute.org/blog/physicians/matthew-dobbs/
https://www.dobbsbrace.com/
https://www.ehlers-danlos.org/what-is-eds/
https://rarediseases.info.nih.gov/diseases/2082/vascular-ehlers-danlos-syndrome
Thank you!
First, for the travel and lodging to make this trip to Florida for Hazel. We have a referral for the quantum house near the hospital, and as of yesterday we have finally gotten approval for us to stay during the one month the castings and surgery should take during mid October through November. Hazel has already had 9 sets of casts and will need at least another 4. Next, she will need surgery on her Achilles tendons. Afterwards, Hazel will need to wear leg braces up to 4 years old. These braces will need to be replaced as she outgrows them. Replacements can cost up to $400.
Second, Dr. Dobbs is also known for his interest in genetic disorders. Hazel’s genetic test results came back today positive for Ehlers-Danlos syndrome (EDS). Hazel will need further bloodwork to decipher if she has classical EDS or Vascular Ehlers-Danlos syndrome (VEDS) (Type IV). She was born with it and will fight with this her whole life. Any additional funds will go towards any complications and surgeries Hazel will unfortunately likely face in her life. We have already noticed some difficulties including mild mitral valve regurgitation in her heart, bruising easily, and loose joints.
She is the toughest, sweetest little girl and we are thankful for any donations and for anyone willing to spread awareness of this extremely rare genetic disease.
I will attach a few links about Dr. Dobbs, Dobbs Brace, and Ehlers-Danlos syndrome and VEDS respectively.
https://paleyinstitute.org/blog/physicians/matthew-dobbs/
https://www.dobbsbrace.com/
https://www.ehlers-danlos.org/what-is-eds/
https://rarediseases.info.nih.gov/diseases/2082/vascular-ehlers-danlos-syndrome
Thank you!
Organizer and beneficiary
Theresa Kotalik
Organizer
Virginia Beach, VA
Lauren Kotalik
Beneficiary