In May I shared Julius' story. Julius has just turned one and lives with his family in the Philippines. He has Harlequin Ichthyosis. Julius' skin condition was not treated for nine months - and due to the worsening of his Ichthyosis, he's lost his hands and eyesight. He has been treated as an outpatient at a regional hospital, but his family cannot afford products to maintain his daily care.
His carer - church volunteer Jacquelyn - has been keeping me up to date about Julius' progress. A couple of months ago, she sent me a photo of Julius, and said that his mother has nearly run out of creams. Julius looked so distressed, so sore.
I can't imagine not having the essentials to survive Ichthyosis. Julius does not have access to the same level of medical care and treatment as myself and the majority of others I know have. I know he and his family will endure some shocked reactions and exclusion because of Julius' appearance. The pain of going without a proper bath or without creams would be excruciating. This risk of infection, skin tightening and further extremity loss is enormous.
And so I wanted to do something to help this little boy. I thought, if people donate just one tub of Dermeze (or Aquaphor or Vaseline), it will help him. I shared his photo and story on social media, asking people to consider donating.
People donated much more than one tub of Dermeze. They donated bath wash and oils and small and large tubs of ointment. They also donated money, so I could purchase more medical supplies to send to Julius. And so I stocked up on Dermeze, QV bath wash and oil, Cetaphil wash, MooGoo wash and scalp cream, eye drops and creams, ear drops, eye wipes, hand sanitiser, Bonds Grow Suits, a fluffy monkey and a present for his big brother.
I was hesitant to send the creams in the post - for a few reasons. People were sending money and ointments and good faith, and what if it was stopped by Customs or stolen? Julius' family isn't a registered charity. Some people in the Ichthyosis community were dubious and discouraging, which disappointed me greatly. Despite all of these doubts, I needed to coordinate help for him. I know the pain of Ichthyosis.
I called a few equivalent churches in Australia - who were unable to provide advice or assist with coordinating delivery - and I also contacted a few people who send medical supplies to other countries for advice. Couriers were suggested, and also registered post. I also spoke at length with Jacquelyn and the church pastor on the phone, who, through crackly lines and broken English, both gave me a promise the medical supplies would get to Julius.
And so I posted the medical supplies by regular Australia Post.
Julius' carer Jacquelyn received the first parcel at her church two weeks after I sent it. She sent me photos of the family, surrounded by creams and bath wash. I had tears. The gratefulness in their faces shows me just how much their lives have been changed.
"At the time, when we have knocked on doors for Julius and we thought NOBODY will open it, I told Julius's mum to look up and pray, SOMEBODY might open a window and God heard it. He touched EVERYBODY's goodness of heart and sent Julius's an unexpected pour of Love and Prayers, that ANYBODY could wished for. Thank you so much to all of you who sent care packages, love and prayers to this little FIGHTER."
She also told me about the effects the medical supplies have had on Julius:
"Julius can now move his body because of the relief that the creams and oils has given him, his skin doesnt breaks like it used to be so he enjoys sleeping and plays by himself or playing with his older brother even he can't see him, a simple touch and cuddle makes him really happy and Julius loves music, he has 60 mp3 healing songs and some groovy musics makes him happy too. He has reached a milestone considering his condition before and now. It was really a BIG miracle and a big leap of hope for the family. His mum said, before, people are scared to touch or even look at Julius but now everything's changed."
I posted another package two weeks ago. The family received it this week. Look how happy Julius looks. And he's getting baby fat! Cute!
This time I included lots of eye care products as its so expensive. His mum is so grateful. I also included a present for his big brother - a magnetic space landscape.
I've posted over 15 kg worth of supplies so far, and another box will go next month.
Thank you to everyone who donated money and creams, shared the posts, asked how Julius is doing and gave me advice on how to get the supplies to him. Julius is just one baby - of many - that we can help. Through sharing my story and through sharing others' stories, people get to know more about ichthyosis and donate to an individual in need, should they choose.
You can now donate directly to a fund - Jacquelyn will be using these funds to purchase creams in the Philippines.
This is social media used for social good. Thank you for your kindness and generosity. Thank you for trusting that Julius is in need.
(Julius' mum has given me permission to continue to share his story and photos on my blog and social media.)