PHILIPPINES | "First of all, this group is amazing. Thank you for allowing me/us to be part of it. I met so many wonderful people virtually, and it has helped us in various ways to cope with and be strong for our SWS warrior. I remember way back in October last year when all the hospitalizations happened, and we had so many questions. With this group, we found extreme support and concrete answers.

My name is Camille, and my husband is Randy. We are both Filipino nurses working in the UK. We had our lovely Enzo in September 2023. He was born with a large port-wine stain on his face extending to his neck, scalp, and groin area. We were surprised when we saw him, but our love for him was even deeper, and we have always been proud to have him since day one.

Enzo had his first seizure episode on October 29. We experienced the hardest 11 days of our lives watching him fight this SWS. Thankfully, he was discharged, but it took a while to see him like he usually is. He was always asleep and low in energy. Fast forward, my husband and I decided to bring him home to the Philippines. We honestly can't take all the heaviness of what had happened, and we don't want the anxiety we felt to progress to depression.

This group really also played a part in us fighting all the sadness as we never felt alone when we read other people's stories. In mid-December last year, we arrived in the Philippines. Enzo remained seizure-free from November til January. The whole month of January, he had mild on-and-off twitching until my grandmother passed away later that month. I prayed so hard and asked her to bring her Enzo's seizure activity and, if possible, take SWS as well with her.

By God's grace and numerous people praying for our son, I am sure Enzo has remained seizure-free since then, with my grandma's help. Also, we have seen a huge improvement in Enzo's overall health and development. We left the UK with query blindness in his left eye (affected by PWS), yet now he can follow us through both his eyes. He has become so active and very chatty these days. I was told by the pediatric neurologist here in the Philippines he won't be able to walk and might talk very late, but so long as he is alive and happy, it's enough for us. He still can't lift his head, but I know we'll get there one day at a time, and we will reach the milestones in his timeline.

Once again, thank you for being part of this family and appreciating our Enzo."

–Camille

P.S. Enzo just turned nine months old in June 2024. Enzo has a loving big brother named Ethan (pictured top left).

UPDATE: In June, there was so much bad news from his neurologist. His CT scan worsened compared to the previous one. His brain is not developing as expected. He is so delayed in his milestones. They feel like he might not live normally and independently in the future as he won't be able to walk or talk, but we trust God that miracles can happen and prayers can move mountains.

Now it's your turn! Share your journey with us here. 

This mommy is from the Philippines, and I met her in the group. Surprisingly, she is from the same province as we are. His son is also an SWS warrior like my Enzo, and we want them to grow as best friends.