Haverly Nulisch Supplemental Trust Fund
Donation protected
Haverly Nulisch is the 9 month old daughter of Heather and Justin Nulisch. Haverly was born with Wolf-Hirschhorn Syndrome (WHS), sometimes referred to as "4P-," which is an extremely rare condition that's caused by a deletion of genetic material near the end of the short arm of chromosome 4. Currently, there is no cure for this disorder.
Every patient is unique, therefore, treatment plans are tailored to manage the symptoms as they arise. Even at 9 months old, Haverly already exhibits a number of WHS symptoms. She suffers from seizures, heart abnormalities, and a number of cognitive and motor delays; Her kidney functions must also be monitored on a regular basis. Haverly currently requires tube feeding and around the clock care.
Developing children with WHS see numerous specialists and therapists to help repair defects, treat their symptoms, and further their cognitive and intellectual abilities. We are seeking to assist to provide the care and help that Haverly requires. The Haverly Nulisch Supplemental Needs Trust has been created in order to do just that. No donation is too small -- Any and everything will help the Nulisch family with Haverly's ongoing treatment plans, medical procedures, and routine follow-up appointments with genetic specialists and medical professionals.
We cannot thank you all enough for helping this sweet girl (and her parents) battle this disorder. Your support is incredibly appreciated! If you have any questions, please either post a comment on Haverly's GoFundMe page or email Pat Ellis at [email redacted].
Checks should be made payable to: Trustee, Haverly Nulisch SNT. Please mail checks to the following address:
The Bank and Trust
ATTN: Haverly Nulisch SNT
PO Box 4010
Del Rio, TX 78840
Thank you all, and GOD BLESS!
Every patient is unique, therefore, treatment plans are tailored to manage the symptoms as they arise. Even at 9 months old, Haverly already exhibits a number of WHS symptoms. She suffers from seizures, heart abnormalities, and a number of cognitive and motor delays; Her kidney functions must also be monitored on a regular basis. Haverly currently requires tube feeding and around the clock care.
Developing children with WHS see numerous specialists and therapists to help repair defects, treat their symptoms, and further their cognitive and intellectual abilities. We are seeking to assist to provide the care and help that Haverly requires. The Haverly Nulisch Supplemental Needs Trust has been created in order to do just that. No donation is too small -- Any and everything will help the Nulisch family with Haverly's ongoing treatment plans, medical procedures, and routine follow-up appointments with genetic specialists and medical professionals.
We cannot thank you all enough for helping this sweet girl (and her parents) battle this disorder. Your support is incredibly appreciated! If you have any questions, please either post a comment on Haverly's GoFundMe page or email Pat Ellis at [email redacted].
Checks should be made payable to: Trustee, Haverly Nulisch SNT. Please mail checks to the following address:
The Bank and Trust
ATTN: Haverly Nulisch SNT
PO Box 4010
Del Rio, TX 78840
Thank you all, and GOD BLESS!
Organizer and beneficiary
Mackenzie Smith
Organizer
Austin, TX
Justin Nulisch
Beneficiary