My name is Gillian and my son Noah, just a toddler, has hemophilia. I have been in your shoes and remember how scary it was when he was first diagnosed. At the time, I did not believe I would ever accept his diagnosis. But here I am over two years later and it is okay. My son is a normal, happy, thriving two year old!
When Noah was born... continue…
HOPE's Mission is to improve the quality of life for families of the newly diagnosed through the age of twelve with bleeding disorders, so that they may HOPE to lead a fulfilling life.
HOPE is for all families to feel welcome in the HNC community, and to offer emotional support and educational resources relevant to their individual situation.
HOPE is an HNC support group consisting of families who have children with a bleeding disorder. Families will learn to manage their child’s bleeding disorder so that it does not define his or her life. Events include educational dinners, regional groups, and formal gatherings at big HNC meetings (such as the annual meeting, family retreat, and holiday dinner).
Though open to any member of HNC, programs are specifically planned to meet the unique needs of families with young children dealing with bleeding disorders. Through these events, a peer support system is developed where everyone can feel safe sharing their own stories and experiences and, in turn, are able to learn from others who have – or are currently going through – the same things. Meeting and talking with other families encourages peer support.
You are not alone dealing with your child’s bleeding disorder, and HOPE is here to support you.
For more information about the HOPE program, please contact Gillian Schultz, HNC's Program Manager, at firstname.lastname@example.org or HNC at email@example.com or (800) 990-5557.
Mentoring Program for Parents
Another piece of the HOPE Program is the Mentoring Program for Parents. This is a peer, parent to parent (or other caregiver) program designed to provide support for those who have a young child diagnosed with a bleeding disorder. We will pair a new parent with a parent who has an older child or grown child with a bleeding disorder. This more experienced person is someone who has “been there, done that” and can provide guided support to their Mentee.
Our Mentors are fully trained on the skills of being a good mentor, including listening skills, types of questioning, topics and resources available, and ways to guide their Mentee so that they can find their way through challenges they may face while raising their child. We hope this will foster knowledge about bleeding disorders, a greater sense of community, and improved quality of life for those involved in the program. This is a formal program, with a year of scheduled contact between the Mentor and Mentee, either over the phone or in person.
Other Resources for Parents
If you are interested in HOPE activities, or wish to volunteer to support this HNC program, please contact us.