The 2019 Living Rare, Living Stronger NORD Patient and Family Forum is a conference in which patients and caregivers can gain insights and practical tools for living their best lives with rare diseases, with tracks for newly diagnosed patients, long-term patients, caregivers, physicians and medical students. Download the full agenda now for a look at the sessions, speakers, events and fun that will make this weekend in Houston one to remember.

In addition to workshops, programs include a Texas BBQ, wellness room with yoga and the hottest ticket in town: access to “NASA’s Museum” aka Space Center Houston, where we are hosting the year’s biggest show! Every registration comes with complimentary entry to the 2019 Rare Impact Awards, celebrating individuals, groups and companies making great strides to improve the lives of people living with rare diseases.

Monica Weldon is a caregiver for her young son, who is living with a rare disease. She will be speaking on “Relationships: Managing Marriage, Raising a Rare Child, Caring for the Other Children” as part of the Loving Rare track, which focuses on education and coping advice for caregivers. Here is an interview with Monica.

Please tell us about yourself and why you’ve founded the Bridge the Gap – SYNGAP – Education and Research Foundation?

When Beckett was 4 months old, I noticed he was not meeting the same milestones as his twin sister. This then began a journey to find answers to help my son. I started to blog about his progress and this led to building a community of parents and caregivers that are now a strong support group. I am the Founder and President/CEO of Bridge the Gap – SYNGAP Education and Research Foundation. My passion to help support these families by raising awareness and creating a strong foundation that will accelerate a path to better therapies.

I retired in 2016 after 23 years in education teaching secondary science. My new focus is on building the programs and mission of Bridge the Gap – SYNGAP Education and Research Foundation. I am the Primary Investigator on the SYNGAP1 (MRD5) Registry and Natural History Study. I am a life member of the Worldwide Association of Female Professionals and a member of the first class of 2017 Illumina Ambassadors established in the United States. In addition to leading the foundation, I am an author, public speaker, consultant on rare disease business strategies and advocates for rare disease legislation at both the federal and state levels. Several of my authored scientific publications include Nature Neuroscience, The Journal of Neurodevelopmental Disorders, and The Journal of Pediatrics. I have authored a book about my son Beckett’s diagnostic journey called “Slow Moving Stream – My Special Boy”. I graduated from East Texas Baptist University with a Bachelor’s of Science in Biology/Psychology (1991) and Secondary Certification in Education (1995). I am married to Chris Weldon and have five beautiful children, Haleigh (26), Taylor, USMC (23), Sawyer (21), and the twins Beckett & Pyper (10).

What specific challenges have you faced when advocating for your child? How did you overcome these?

One of the biggest problems I have faced is trying to obtain getting needed services for my son at the State level in public school and through Medicaid waiver programs.  The education system is strained with lack of resources and under staffed to get the needed quantity of therapy that is required to keep him progressing at a constant rate.  The state programs which allow him to have many of his medical needs taken care of are depleted due to lack of funding in our state.  We have considered moving to another state to obtain the services that he so desperately needs. Respite care is essential.

What are some resources available to help families better manage their family relationships while being impacted by a rare disease?

If you are a person of faith, lean on your church.  There are many special needs programs for couples and siblings of those with special needs.  Find camps that will include both the child of special needs and typical siblings.   If couples are having problems, seek counseling.  If finances are problems, negotiate with the counseling group to see if there are sliding scales they use to charge either low rates or none at all. They all have them.  Everything is negotiable.

What can parents do to feel less overwhelmed by a rare disease diagnosis?

I believe that grieving the loss of a child you thought you would have is a must.  Counseling can help and also spending time away from the situation to work on the relationship can be beneficial.  The question becomes how?  Especially if you are financially strapped and may not have family or friends to help relieve and remove you form the stress of caring for a special needs child.   Working  out and taking time for yourself is incredibly important.  People should not feel bad for taking an active role in self care.  It is a MUST!  if you don’t you lose yourself.

How can parents help their child living with a rare disease feel less isolated from the children who don’t have a rare disease?

I think that families should include them where ever possible and treat them as regular people.  After all, they are.  People seem to forget that just because they have a rare disease or disabled from one they do not feel, think or understand what is going on around them.  They do and it’s just as important as if hey were not sick or disabled.

What are your tips for other parents who have children newly diagnosed with a rare disease?

Find a community like you! If you don’t have a community, then do not be scared to begin one. There are other people out there like you.  Give them the opportunity to find YOU!  This will make a world of difference in such a world already predisposed to isolation.  Once you find a community, scour the world for experts.. if they’re none, find those who have related field in the symptoms of your disease.  There will be someone eventually who will want to help.  Never stop asking for help.

What do you wish everyone knew about families impacted by a rare disease?

It is HARD.. the days are Hard and long, but then days are triumphant and joyful.  This life is easy to take for granted, but the circumstances also teach you not to sweat the small stuff.  You really learn what is important in life.  Choose your battles.  Think about the things that are hard and say to yourself ” Do I want to die on this Hill today?”  No! There are mountains and valleys.. keep going!  This circumstance are meant to teach you something.  Take those bad things and look for opportunities.  Don’t feel like you have been trapped.  Knowledge is power and actions make progress.  Find leaders in the space making a difference and replicate them.  Follow successful people, do what successful people do and you WILL be successful.