Jamal’s Story

By Valeria McConnell

Jamal’s Helping Hands, Inc. Poised to Fight Rare Disease One Resource at Time

Neurofibromatosis (NF) 1 stopped being a rare disease to me after my son, McKinley Jamal Thomas was diagnosed with this rare disease at the age of nine. There are an estimated 7,000 rare diseases in the world. In the United States, approximately 25-35 million Americans are living with NF1. The Orphan Drug Act of 1983 defines a rare disease as a condition that affects fewer than 200,000 people. What about my one person…Jamal?

Most parents would ask this question after receiving such devastating news about their child. Unfortunately, healthcare providers and parents struggle to answer the multitude of questions that come after diagnosis. An adequate amount of medical research and treatment information are often non-existent - keeping rare disease obscure and unknown.

The journey with Jamal began with finding a nearby specialist that understood his condition and could help educate me enough to consider effective treatment options. NF is a genetic disorder that causes tumors to grow on the nerve tissue. There are three (3) types – NF1 usually appears in childhood; NF2 and NF3 appear in early adulthood.

NF1 did not prevent Jamal from achieving his goals, as he graduated from the University of South Carolina with a Master’s in Social Work and a certificate in Drug Addiction Studies. Jamal was an extremely special person who never met a stranger. His people map spanned from doctors to pastors to toddlers. On March 28, 2017, the world lost Jamal at the young age of 31.

Scripture tells me that God will make beauty out of ashes, thus Jamal’s Helping Hands, Inc. was birthed to help other families affected by rare disease. Our journey, while challenging, made me resourceful, knowledgeable and resilient in championing the fight against rare disease.

On November 20, 2017, Jamal’s Helping Hands was incorporated with the vision of creating a non-profit organization to enhance the quality of life for patients, with chronic illnesses or rare diseases, and their families. Families like mine. We provide client-focused support to patients and their families by providing a variety of services and educating them about resources readily accessible in their surrounding community.

These services include, but are not limited to providing caregiver information, educational workshops, outreach and awareness, emergency care scholarships, lodging assistance and other resources in an effort to make the experience of rare disease easier. These include:

• Healthcare Coach helps patients and families navigate the daunting healthcare system to get quicker diagnosis and effective treatment.

• Support Groups welcomes caregivers to participate in a collaborative and supportive environment based on trust, understanding and empathy.

• Educational Workshops deals with a variety of important topics such as critical questions to ask doctors, how to balance work and caregiving and finding resources.

• Financial Assistance to families to pay for medical appointments, diagnostics and travel to out-of-state specialists.

Jamal’s Helping Hands, Inc. is linking our hands together with each community to help fight rare disease one resource at a time. We will win with Hope, Help and Hands. Please join us in this fight.

If you would like more information on Jamal’s Helping Hands, Inc., visit JamalsHelpingHands.org. You can also find them on Facebook at @JamalsHelpingHandsInc