25 May 2015

Ichthyosis Awareness Month - Julius' story - "Believe that miracles happens when you least expect it."

Here is Julius' story, a baby born with Harlequin Ichthyosis in the town of Parang, in the province of Maguindanao, in the Philippines. The family traveled to a bigger hospital in the region to get some answers about the condition of their little boy just after he was born, but this did not assist with treatment advice. 9 months later, Julius' story was discovered by hospital volunteers Jacquelyn and her sister, who sought assistance from FIRST, and she shares this amazing story for IAM. Julius' mum has given us permission to share their story and pictures of her and Julius.  

This story is a serious example of why access to healthcare is so important. While the photos might be confronting, they show the severity of the condition. 

I asked Jacquelyn whether there is a fundraiser for Julius.She told me: "When I posted Julius' condition finally he was visited by our local government unit head and help us out with the medicines and they promise to come back and raise funds for Julius." So when I get word about a fundraiser, I will spread the word. 

I've cried seeing photos of his tight skin and little fused hands and feet. Keep fighting, baby Julius. And thank you for your amazing care and advocacy Jacquelyn - you're giving a voice to this important story. 

"Julius was born on July 25, 2014 in a birthing center here in Parang, Maguindanao. Since our place is not that progressive and developed most of the health assistance are really hard to get, especially for those people we consider to be below the poverty line.

3 days after Julius was born, his mum and dad, together with the extended family, decided to go to a regional hospital (Cotabato Regional Medical Center) to seek a full medical check up. But the doctor's weren't able to identify Julius' condition at first, so they completed some a research on the internet and found out and diagnosed Julius with Harlequin Ichthyosis.
Julius didn't undergo any tests from the hospital, that's why no prescription or any specific treatment advice was given. The doctors just told the mum to take care of the baby as long as they could (they actually gave Julius a week to survive, which is frustrating!). Since the family was convinced there was no cure for the baby, they went home and waited for the dreaded day. 

But Julius was born a fighter. He lasted 9 months without any vaccination or newborn screening, or any formal treatment. His mum bathed him everyday and applied pure coconut milk to soften the skin. She was doing everything she could to care for her little boy, but it was not enough. Julius' other hand melted, his skin smelt bad and still there was no medication.
As I keep on saying he was a fighter. I actually met Julius last April 13, 2015 when I stumbled across one of his pictures on Facebook. I really had no idea that his mum Annie Jean gave birth to Julius with Harlequin condition. I did some research and found FIRST, and made an inquiry and confirmed the pictures I sent them that the baby has a Harlequin baby. So i decided to visit them and took my camera. I asked for permission to use the pictures and emailed again to FIRST and ask for information on how to treat such a skin conditions, and they provided me with a link. My sister and I decided to make a move and tried to contact three possible NGO's and got a confirmation from them that they will help Julius to get medical attention here in Davao City ( the Southern Philippines Medical Center, or SPMC). FIRST also awarded Julius financial aid and the family was able to buy the prescriptions we cannot get inside the hospital.
Julius was admitted May 10, 2015 here in SPMC and on Day 1 members from the Pediatrics Department, Ophthalmologist Department, Genetics Department, and Dermatologists Department convened to have a multidisciplinary action so Julius can start his treatment.

Day 1, Julius underwent surgical cut for his IVF's (pedia), we were given prescriptions for Julius' eyes because they were already infected. The Ophthalmologist confirmed he was already blind because both irises are damaged. For his skin, the doctors instructed us to bathe him morning and night with Cetaphil cleansing bar and body wash, and to apply a restorative moisturiser, plus a lotion that Dermatologist made to soften Julius skin easily.

We followed what was instructed of us, and Julius skin looks great without even having problems with irritations.

There's just a little problem 2 days ago because he has diarrhea and lost too much fluids apart from Julius pulled his dextrose and he needed another surgery and he has fever last night, but it subsided today. And now he sleeps soundly again with his beautiful skin, though there's a little bit of hard skin left on his feet and back of his head, and a few patches around the eyes and ears but soon it will soften too.

Now Julius needs ongoing supply of petroleum jelly and Cetaphil Restoraderm moisturiser importantly. The Dermatologist has said that if Julius' continues to improve, there will be a medication that can assist with his ongoing treatment, too. In a place like ours, all we have is love and service.

And that's all I can give them. I am looking forward to Julius' full recovery and it's more than enough to see him grow happy with his family and to instill to them to keep on praying and never lose hope because there are good people everywhere that will help them. They just need to believe that miracles happens when you least expect it."

This post was edited by Tash who blogs at Jouljet. Follow her travels on Twitter and Facebook

May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here. 

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  1. Thank you for sharing this story.

  2. oh dear god, what a heart-wrenching story, my prayers to Julius and his family!

  3. This sweet little one is alive through the love and tender care of his family. So heartbreaking he has lost his hands and vision.

  4. Oh, I cried that poor baby Julius had to go so long without medical assistance, and lost his hand and vision in the interim! What a brave boy, and his family too. Is there any kind of donation fund set up to help with ongoing costs?

  5. Feeling Julius's pain, u r taking great care of him, praying for your family.

  6. Such a fighter Julius! You and your mom are an inspiration to us. Hope and positive thoughts to all who care for you.

  7. Since his story appeared, not one day has passed where I don't think of Baby Julius. heart emoticon he has truly captured my heart...I am always praying for him.

  8. Julius has had such a tough life over he past 10 month's and since i first saw him a day hasn't gone by that he hasn't been in my thoughts, his story makes me realise just how lucky we are and also how important the care of a baby with H.I. is in the first precious month's of life, i hope baby Julius' health continues to improve with time and he keeps fighting because he is one strong little baby


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