Longing for Loulou

My best birthday ever was Jeremy’s 37^th birthday. Jeremy, Jonah, and I traveled to Toulouse France to meet Guilhain, Francine andtheir 2 children, Laura, and Elouan. Our friend Elvis, from Queens, raised in Leone came with us. Elvis helped bridge the language gap and documented our meeting in this video.

This historical trip was 11 years ago this week.  Time flies so fast and I just want to stay in the past. The past being the south of France with our new best friends.

Guilhain met us at the airport grinning from ear to ear, huge hugs, and cheek kisses. Elvis whispered, look out country Frenchmen can be a little handsy. What I wasn’t prepared for was the country Frenchman’s driving style. Holy crap how he flew down the long windy road, sailing up and down the hills. Jeremy, Jonah and I were smashed in the backseat of his little European car. I tried to watch the scenery careen by out the window. It was foggy out and the sun was rising over a chilly winter morning. The road was flanked by acres and acres of fields, I caught glimpses of the shimmery frost on blades of tall grass.  It was literally breathtaking.

We pulled up to their house on the hillside and entered a lovely and lively home. Laura sat at the table watching her mom bustle around the kitchen prepping a breakfast for us. Elouan was dancing in front of the television watching Madagascar singing Let’s Move it Move it. 

Elouan a.k.a. Loulou had Jonah at Bonjour.

Our visit turned out to be our first patient population meeting for Sanfilippo type C and the formation of H.A.N.D.S. 

Belen, Pol’s mom from Barcelona came, she stayed at Guilhain’s sister and brother-in-laws house, who happened to be Spanish. Raquel, Joana’s mom from Lisbon joined as well, she bunked at Laura and Elouans’ grandparent’s house. It was quite the family affair. I loved that the entire family wanted to meet us and take part in helping find and fund a treatment for our children. 

Jeremy and I didn’t realize that we would be wined and dined for a week! Jeremy’s Birthday week no less.  Francine and Guilhain hosted us at the best French restaurants that the south of France had to offer. 

A relation shut down his restaurant to feed all of us, Jeremy had the best French deserts and was sung happy Birthday in 4 different languages (this happened all week long)! A reporter showed up to document the occasion; next day Jonah got to see himself in the paper.

Jonah was absolutely enamored with Elouan, he was 4 years older than Jonah and Jonah was at that age where big boys were like mega super beings to him. 

It is fascinating to watch little kids carry on a conversation in different languages. It really didn’t matter what they were saying, they had the same interests. 

Elouan had an awesome collection of cars that he happily shared with Jonah. The best was Elouan’s kids sized 4-wheeler, it was crazy watching Jonah, still a toddler, hop on that 4-wheeler ready to turn cookies.

 

Joana, Pol, Jonah, Laura and Elouan were all diagnosed within months of each other. We were less than a year into the diagnosis when we all met in person the first time. The diagnosis was still very fresh in our hearts and weighed heavily on our minds. But that week we put our fears aside and rejoiced in finding each other. 

We had already started to raise funds to put towards our gene therapy program at Manchester. Brian Bigger gave us a presentation that week over a skype meeting. I felt so empowered being with all our families, together we would conquer Sanfilippo. I still feel that way.

 

Elouan passed away early morning Friday January 14^th a seizure took him while in bed. I don’t know that I ever truly believed that our kids would see a treatment in their lifetime. I hope yet, temper my expectations, truthfully, I don’t let myself think about it.  I think we all just assumed that our kids would make it to their 30’s.  I’m lying I’m terrified that Jonah will die in his sleep and I’ll find him cold in the morning.

 

I just cannot believe that Elouan is gone. I cried all day yesterday. My phone started pinging at 4:30am, I turned it over to look around 6:00am. The shock, that feeling of disbelief, I guess this is how it happens. 

One minute everything is fine the next it’s not. Elouan had his first seizure last year and just a couple since then. We all know seizures can happen to our kids. We still all hope that it doesn’t and then when it does, it takes us by surprise.  

A few months ago, Guilhain messaged me late at night, which meant it was in the middle of the night for him. I asked him if he was having a hard time sleeping. He told me that since Elouan’s first seizure he was too nervous to fall asleep. He stared at Elouan’s room camera watching him sleep instead. Sometimes parents just know. 

France has a relatively large IIIC patient population. There are 4 families with 2 kids each, the 4^th family was recently diagnosed and has begun a full front attack on Sanfilippo. Their children are very young, a baby girl Eden and her older brother Abel. It was this family that Guilhain was texting me about that night. He told me that it might be too late for his children, but he was hell bent on helping Eden and Abel.

 

I love you Elouan, thank you for being Jonah’s friend. I’ll never forget the two of you singing and dancing: “LET’S MOVE IT MOVE IT!”

 

This disease is never going to stop unless we stop it. So, let’s move it.

You can donate for a cure in memory of Elouan at the Eden and Abel in French fundraiser  or in English.