Get to know the Bergh-Hansen family – Rasmus, Katrine, Molly, and Pelle!
Find out what the past year has been like in their lives with this week’s Family Friday.
What has been going on in your family and for your child in the past year? What have been hard parts? What have been bright spots?
The past year has been a crazy roller coaster for our family. It started with the birth of Molly’s little brother, Pelle, on New Year’s Day 2020. A beautiful and healthy baby boy. We were so happy and Molly was the sweetest big sister. She was constantly calling for “baby” and searching for him (even under the couch), wanting to give him toys and showed us to make him a bottle if he was crying.
Shortly thereafter, Molly started changing. She got increasingly hyperactive, was throwing with everything she could reach (she was not aggressive at all, just extremely hyperactive) and started crying and screaming during all her awake hours. We couldn’t figure out what was going and what was bothering her. it is still a mystery what happened. It was heartbreaking to watch our happy little girl suffer like that.
And we had both Molly and the baby to protect and care for, so we were just lacking extra hands all the time. We couldn’t go anywhere due to the intense screaming.
It was during the first wave of COVID and we were under lockdown, so it was very difficult to get any help. We were under extreme pressure, and it is a trauma that we will never get over.
Almost overnight, Molly lost all her words and she slowly started disappearing in front of our eyes. She got very distant and eye contact was getting more difficult. We decided to adjust some of the medications she was taking to see if that would help get our happy girl back.
After many months of constant crying, it finally stopped and she felt much better. But, unfortunately, her other abilities are still lost. She doesn’t talk, play, or dance and can’t eat without help anymore. She can’t express her needs and she doesn’t respond to her name anymore.
In many ways, we feel that we lost her last year, even though she is still here with us. It is hard to describe, but we know that other Sanfilippo parents will understand this devastating and conflicting feeling of grief of losing a child, but at the same time feeling so blessed that she is still here with us.
Another change the past year is that her sleep has gotten worse. She is so tired, but has so much stress in her body, which makes it impossible for her to fall or stay asleep. We have always had many sleepless nights with Molly. But in the past, we could spend the nights enjoying some quality time with her and playing with different things. Now it is a matter of constantly running around the house after her, trying to avoid accidents from happening.
Even on the good nights, we don’t sleep well because we are always on high alert. Every time she moves, we fear that now she will be awake for the rest of the night.
The physical struggle has also gotten much tougher as Molly is getting bigger and stronger.
Our social life has also suffered a lot. Other people will never know the energy, amount of planning, packing, logistics, and challenging car rides it requires for us to go anywhere. Besides that, it is very difficult to engage in conversations when constantly being on high alert and preventing things from happening.
It has also become very hard on us to be around people with kids as it gives us a picture on how Molly could have been if Sanfilippo hadn’t stolen her from us and how our life with her could have looked like. That is just heartbreaking for us to watch and makes it difficult for us to socialize.
On the positive side from the last year, we are so grateful that Molly is feeling better and is happy again. We often get to see her beautiful smile and hear the most wonderful sound in the world – her laugh. She always smiles and laughs when we sing to her.
Some days we are also very lucky to have very intense eye contact with her, and it feels like she is looking right into our souls. And then she smiles. It is the most amazing feeling in the world to get that valuable contact with her and it makes us feel that she knows how much we love her.
We have also gotten much more help after hitting rock bottom last year, so now Molly is at a home for kids with special needs a couple of nights a week to give us some relief at home. This is a very conflicting feeling as it gives us the possibility to breathe, gather strength, and spend quality time with Molly’s little brother without all the stress. But it also comes with great sadness and sorrow, as we miss her so much and we are heartbroken when she is not at home and that we are not able to take care of her full time anymore. But we know that she is around caring people and luckily Molly is happy everywhere she goes and she loves people very quickly.
We also have some young girls helping us at home now. Molly loves them and they have become her best friends. We feel so blessed to have them in our and Molly’s life.
What is your child like today, compared to when they were diagnosed?
Molly is not the same girl as when she was diagnosed. Back then we could talk, sing, play, and interact with her. She loved to dance and dress up like a princess. Even though she is only four years old (five in August), she has already lost all those abilities and she needs help every minute of her awake hours. We can never be more than one step behind her to keep her safe.
We have lost a huge part of her. But we love her just as much and we always will. That will never change!
She is such a special girl, and she gives back with everything that she has. Everyone around her simply adores her.
We are so proud of Molly and amazed of her bravery and strength despite everything she has been through. We hope that all her struggles will make a difference, so one day no kids will have to suffer from this horrible disease.
What is one thing people would be surprised to know about living with Sanfilippo?
The level of anxiety high at all times when responsible for a child with Sanfilippo. Everything happens so fast, and there is never a second to relax or look the other way. A lot can happen in just seconds. It causes a lot of stress and is wearing on us – both physically and mentally. When she is around, there is not a single minute to breathe or a minute to eat or have a conversation. People who have never been in a situation like this will probably never fully understand the level of stress and anxiety it causes. Even when everything goes well, it is never without anxiety at all times and constant fear of how it will go.
We will never be the same people again as we were before Molly’s diagnosis. We can smile and laugh, but we will forever be broken inside. But we love our beautiful girl so much, and we try our best to stay as happy, brave, and strong as she is.