An HI diagnosis is almost always unexpected and can be very hard to adjust to. Luckily there is a wonderful group of caring families who have children in their families with HI and are happy to share their experiences and support others. To help new families cope with it all, CHI supports a program linking families of the newly diagnosed with experienced HI parents who understand the needs of HI families and have the capacity to support these families while providing them with valuable information.
Our CHI Mentors are adults with HI and HI parents who can provide support and valuable information. They are:
Maureen Bakker – The Netherlands: Maureen has a teenage daughter with hyperinsulinism. Her family traveled to the United Kingdom for part of her daughter’s care. Maureen is also the leader of the Dutch patient advocacy organization, CHI The Netherlands. Maureen can be reached by email at to_maureen@hotmail.com
Kiersten Cocuzza – USA: Kiersten’s son, Asher, was born with severe diffuse disease. He had a 98% pancreatectomy and has been managed by continuous dextrose, Octreotide, and Lanreotide. He has since graduated from all medication and solely uses a CGM for monitoring. He is managed by diet and being followed for diabetic transition. Kiersten and Asher live in New Jersey close to Children’s Hospital of Philadelphia (CHOP), a CHI Center of Excellence (COE)! She can be reached at KL.Cocuzza@gmail.com
Randy Hart – USA: Randy has two adult daughters born with HI/HA, and Randy’s husband was diagnosed with HI as a baby. Randy can be reached by email at rahart@comcast.net.
Kimberley Pfaff – USA: Kimberley is an HI mom to son Ricky with unknown genetics. Kimberley can be reached at pfaffette@gmail.com
Julie Raskin – USA: Julie is an HI mom to an adult son born with HI due to mutations in the potassium channel. He now has post-pancreatectomy diabetes. Julie can be reached at jraskin@congenitalhi.org.
Pam Williams – USA: Pam Williams’ has an adult son born with GK HI. Her son now lives with post-pancreatectomy diabetes. Pam can be reached by email at j.o.williams@juno.com.
For any further questions, we encourage you to reach out to CHI at info@congenitalhi.org.
