Due to the Coronavirus, many have been social distancing for months now. We take this seriously for healthcare workers, the elderly, people with weak immune systems, and so many more. When I wish I could forget about Coronavirus, I simply think of my own family, three years ago. Because of Sanfilippo Syndrome, a complication with an illness could have killed my sister. Without a personal connection to a story like this, it may be hard to convince yourselves to take necessary precautions. So, while we may not be required to stay home anymore, I will continue to share the stories of Sanfilippo families like mine as a reminder to do your part and be cautious for the sake of others.
Meet The Fowlers:
This is Haidyn, her parents, and her super sibling, Braelynne. Haidyn has Sanfilippo Syndrome and here’s why you should do your part for the Fowlers:
1. How have your lives changed since the virus got more serious in the US?
We have been quarantined since it was recommended to do so. Literally, days before the quarantine was recommended we received our diagnosis of Mucopolysaccharidosis lllA – Sanfilippo Syndrome. We knew Haidyn was immunocompromised before this diagnosis but per her geneticist, she is now considered severely, high risk. We are currently sticking to a “no one in and no one out,” basis. We miss our family dearly and wish we could hug everyone that have hearts breaking like ours after this diagnosis. Time will pass and so will this virus. We hope to hug the necks of our loved ones and be able to move forward with critical appointments and the possibility of treatment for Haidyn.
2. What has your family been doing to stay busy and entertained?
We live on 58 acres in the countryside of Georgia. We spend most of our time outside, playing on the playground, going for walks, and riding the ranger. We are enjoying the beautiful weather and hoping it sticks around. My oldest has school work to keep up with and we are also trying to establish a “homeschool” routine for Haidyn.
3. How is the quarantine different for Sanfilippo families than regular families?
I believe the quarantine is difficult for everyone but as a Sanfilippo family, we truly fear what we could be subjected to while in public. Nothing is worth risking what could be a deadly virus if our daughter were to become affected by it. Our anxiety has been on high and we are praying and begging our friends and loved ones to stay home. It’s not about you – it is about the immunocompromised, the weak and the elderly. Have empathy for the ones who need it most.
The Fowlers laughing at home.
4. What’s the biggest challenge that you’ve faced while in quarantine?
Haidyn has been all out of sorts since her routine flew out the window. Sanfilippo kids thrive on a set routine. Not only have we lost our school days, but we currently are without therapy and any regular outings in public. We have struggled with some regression, less verbal speech and many meltdowns. Our oldest is heart broken that she will not finish her sixth grade year, at a new school, where she was finally starting to feel at home. Us, as parents, we are enjoying the time with our girls but our hearts are hurting knowing that they are struggling to adjust.
5. What do you find to be calming during this time?
Sunshine. We love some Vitamin D in our household and getting outside seems to be each family member’s happy place. I’ve found myself in constant prayer for peace, strength and understanding.
Haidyn & her super sib playing in the pool.
6. Do you feel like you’ve bonded more as a family during this time? Is there anything else positive that has come out of this?
Yes. We are a close knit family but we are embracing this time we get to spend together before the busyness of everyday life returns. It is nice to have nothing to do and all the time to enjoy one another’s company. I find positivity in the fact that we received our daughters diagnosis in the midst of quarantine. We are grieving and it is calming to know that we can grieve in peace without immediately having to return to a normal, demanding schedule.
7. What do you have to say to people reading this blog, considering the importance of staying home?
I recently posted a status to my Facebook account in regards to this topic. I have hope that when others read about your side of the story, MAYBE, just maybe, they will reconsider not taking this seriously. It is a bit long, but it’s good.
To everyone that keeps talking about COVID19 not being a big deal – it’s a hoax – I don’t know anyone with it… etc. 1. I know someone, very close to us, that has had this virus. Fortunately, they recovered fine & needed no serious medical attention. 2. You speak of, “only 1% of the population will be lost – or whatever your comparison is.” 3. That 1% could easily include this baby girl, that is her mama’s world and the biggest daddy’s girl. We knew she was immunocompromised but after the news of her diagnosis, that she was born with, we now know that she is of SEVERE-HIGH-RISK for this virus. Her geneticist made it clear to keep her in and hold off on our future appointments she needs until this dies down. Honestly, we are so lucky that we have not had major complications or even lost her due to a minor illness or the flu. That is our reality. 4. I don’t give two crap’s about the economy booming or struggling. I mean, I do… but I care more about human life than a dollar. 5. Maybe you don’t have that 1% in your family or even as a close friend and if that is the case – YOU SHOULD BE THANKFUL. But human life matters. My daughter matters. You can stand to hangout with your kids for a few months, stay away from the bars and restaurants, enjoy a family dinner at the table, rebuild a business, buy a new home, find a new job, file bankruptcy and start over, pay off debt, live beneath your means, and so many other things BUT you can’t bring a human life back once they are gone.
Haidyn & her mom.
8. How has your super sib been dealing with this situation?
Our oldest, Braelynne, is amazing. Of course, she is bored and misses her friends. She misses going out to eat and tumbling classes, but she understands the severity of her sister’s health and well-being. We are so thankful to have two girls that love each other so very much.
Questions for Super Sib – Braelynne
9. How do you explain to your friends the importance of staying home?
I tell them that my sister’s health is more important than having a good time. This will pass and we can enjoy life again, but if my sister gets sick, she may not make it. That is not worth it to me. I love her.
Haidyn & Braelynne.
10. Do you have any extra responsibilities now?
I help my Mom with Haidyn and cleaning around the house when it’s needed.
11. What has been the hardest part for you in quarantine?
I miss my friends and I am sad about missing cheerleading tryouts, finishing my sixth grade school year and tumbling classes. I do enjoy sleeping in and hanging out with my family.