Being a grandfather of a child with Dravet syndrome

Let everything happen to you
Beauty and terror
Just keep going
No feeling is final
                                                     -Rainer Rilke

How would you feel if your son called you in the middle of the night to tell you they were with your granddaughter in an ambulance and on the way to hospital? What if such a call or text was occurring with increasing frequency? How would you feel when you learned she has a rare disease and there is no cure? How would you feel seeing the doctors and nurses around her bed in the ICU removing an intubation tube, and you see the pain on her and her parents’ faces? How would you feel if you were watching your smiling granddaughter in the playground and all of sudden she had a seizure and fell to the ground before you could catch her? How would you feel if social isolation was a norm in your family even before COVID, because any kind of viral infection in your grandchild could lead to seizures and even death?

How many times will you continue to break down in tears out of the blue or when someone asks you about your granddaughter? How many different emotions come to mind? How do you turn your fear, grief, pain, stress, anxiety, anger and a multitude of other emotions into positive action?

My name is Ted Odlaug and my granddaughter Anna was diagnosed with Dravet syndrome in May 2018 when she was 7 months old. Dravet syndrome is a rare, highly refractory form of infant- and childhood-onset epilepsy marked by frequent and often prolonged seizures that are difficult to control with existing medications, significant cognitive and motor impairments, and a higher risk of sudden death.

I have been fighting with the above emotions for 2.5 years now, while working hard to offset them with my own call to action. I call it turning “love into action.”

If you are a grandparent of a child newly diagnosed with Dravet syndrome here is my list of things I have done to help me deal with it all. I hope they help you too.

  1. Take care of yourself – I have taken up meditation and I am fortunate my daughter Erika is an expert in the art. It has helped me relieve anxiety and stress. I continue to make time for exercising. I quit alcohol over 500 days ago as I found after one or two drinks my level of anxiety and worry for Anna and her parents increased.
  2. Inform yourself about Dravet syndrome – When Anna was diagnosed I started to read and learn about the disease. What is the cause? How is it treated? What are the co-morbidities? Who are the experts?  Knowledge can be powerful medicine.
  3. Get connected and involved with the Dravet Syndrome Foundation. My son Andrew and daughter-in-law Kim have benefited from the support and resources provided by the foundation. I decided early on to fundraise for the foundation and members of my extended family have also gotten involved. If interested you can see our fundraising site here to check on our progress. I joined the board in 2019 and it gives me the opportunity to use my experience in the pharma world for a great cause.
  4. Support the parents of your grandchild. Being a caregiver of a child with Dravet syndrome is 24-7 so my wife Pat and I, as well as other family members in the Chicagoland area,  do whatever we can to help them. Pat babysits Anna’s sister Lily 2.5- 3 days/week. So does Anna’s other grandmother Marsha who also helps with gardening. I take care of home maintenance, and other items around their home and run errands. Pat makes them meals and shops for them. We try to get them time to themselves. We encourage them and provide lots of hugs. Andrew and Kim are my heroes, and they turn love into action for Anna every minute of every day and night.
  5. Engage with your grandchild What I mean is do not be afraid to interact and worry that she or he will have a seizure any minute. Learn what to do in the event of seizure. Play and engage with them and enjoy their smiles, hugs and kisses. I call Anna’s rare kisses “Golden Kisses”.

Some days and moments it is so easy to lose hope. But progress is being made with new therapies and the possibility of some treatments that act at the DNA/RNA level.

Never give up and turn your love into action.

Being a grandfather of a child with dravet syndrome
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