Grief, Legacy, and Hope with Dr. Klane White

National MPS Society: Our Voices

Show Introduction:

• The host introduces the National MPS Society's Our Voices Podcast for the second season, focusing on unmet needs and areas requiring more MPS and ML community support.
• Emphasizes the lack of knowledgeable physicians in rare disorders like MPS and ML, leading to dismissive attitudes and missed treatment opportunities.
• Interview Introduction:
  • The host, Jason Madison, introduces Dr. Klane White, a pediatric orthopedic surgeon specializing in skeletal dysplasia, metabolic bone disease, spinal deformity, and genetics.
  • Dr. White is an MPS parent who has navigated the challenges of caring for a child with a rare, life-threatening disease.

Interview Topics:

• Navigating Life and Career with a Child with a Rare Disorder:
  • 1. Dr. White's personal experience and challenges as a parent and surgeon.
    2. Balancing care for the child's specialized needs and managing personal and professional life.
  • Supporting Non-Affected Siblings:
    1. Addressing the concerns of overshadowing and ensuring a sense of individuality and involvement for non-affected siblings.
    2. Utilizing support from friends, family, and the community to help provide attention and engagement for non-affected siblings.
  • Dealing with Grief and Honoring the Legacy:
    1. Coping with the loss of a child with a rare disorder and the grief process.
    2. Keeping memories alive and celebrating the child's life through rituals, commemorations, and ongoing remembrance.
    3. Establishing a foundation or initiative to give back in the child's name, supporting other children with chronic, life-threatening diseases.
• Conclusion:
  • Expressing gratitude for the support received from the MPS community and emphasizing the importance of reaching out for help.
  • Highlighting the power of connections formed with other families and professionals during the journey.
  • Encouraging listeners to cherish and remember the lives of their loved ones and find meaningful ways to honor their legacies