By: Trish, Parent of Morgan name, a 7 year old with a HNRNPH2 genetic change
“It will be so fulfilling to learn that you have a tribe of other families who will illuminate the journey you’re on and connect and empathize in a way no other family ever could.”
What is your child’s relationship like with his/her siblings?
Morgan’s brother Shane, just 14 months younger, surpassed his sister developmentally rather quickly. This in many ways has placed him in more of a big brother role to Morgan who is globally impacted by an HNRNPH2 mutation. He helps with her care and cheers her on to meet new milestones, however small! They have very different likes and dislikes, but enjoy movie night fun at home and snuggles on Saturday mornings in mommy and daddy’s bed.
What does your family do for fun?
Our family likes hosting extended family gatherings and going away on short day trips vacations. Most Friday nights we enjoy a family movie at home with popcorn – sometimes we select one we already know and love, and sometimes a new one. Portions of weekends are spent escorting the kids to music therapy, aqua therapy, soccer and tennis. There’s nary a weekend without time with grandparents!
Tell us about the biggest hardship your family faces.
Chasing down the best therapies, both traditional and “outside of the box” , while juggling full time jobs and trying to take advantage of programs we qualify for given Morgan’s needs and co-founding the YBRP organization is very demanding. It’s impossible to ever feel really ahead in this game. There’s always more to be done. Life alternates between being like a blur and feeling like we are on a treadmill, quite often. Morgan’s genetic disorder has altered the vision we had for her and for our entire family. We’ve had to adjust plans and expectations we had about our lives and that is much easier said than done. There is unavoidable grief in this, despite the enormous happiness found in the smallest of triumphs. There is worry about Morgan’s health given what little is known about the condition. Could there be something we are inadvertently missing? Concerns about the future, could be debilitating if we let it be. So, we do our best to live day to day. We know we will always do our very best for Morgan, no matter what arises. Having two very different children, one needing us to slow down and be patient, the other who requires lots of interaction and seeks to move and explore, sometimes means we need to split up to meet everyone’s needs. This isn’t the way we ever wanted it, but we make the adjustments we have to, given the situation.
What about your child puts a smile on your face?
Morgan shines in our eyes! When she listens to some of her favorite tunes and squeals with excitement it’s hard not to smile just seeing her so happy.
What motivates you to participate in research?
We want Morgan to live her best life. We must attempt to remove any of the obstacles standing in the way of that. Sharing information, telling our story and participating in research is the best way to help Morgan and others who share the HNRNPH2 disorder.
How do you feel you are impacting our understanding of the genetic changes being studied in Simons Searchlight (16p11.2, 1q21.1, or single gene changes)?
We want to feed you all the information we possess to make it available to researchers to study and understand – this we believe will lead to therapeutics and someday a cure!
What have you learned about your child’s condition from other families?
We have many health related issues we are now monitoring, because of connections we’ve made to other families touched by the same disorder as Morgan. Though this can be scary, it’s also a good feeling to know we can be so much more proactive and responsible for her care.
If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?
To please be in touch with other families. It will be so fulfilling to learn that you have a tribe of other families who will illuminate the journey you’re on and connect and empathize in a way no other family ever could.
Is there anything else you would like to share with other families?
Please visit ybrp.org! You’re HNRNPH2 tribe is waiting to meet you there!