Elijah the Superboy at Richard House Children’s Hospice | London Family Photographer

I can’t help but call this blog post Elijah the Superboy because in my eyes, Elijah is simply SUPER.

I first met Elijah when he was 8 months old. Back then, he was a little baby, overcoming hurdle after hurdle of his health condition. Nothing much has changed, because today, he is 2 and a half and is still – surely and steadily – making leaps of progress, to his doctors’ amazement. From not being able to move anything in his body at all, Elijah now smiles, moves his feet, tries to talk and his communication is improving all the time, considering the acuteness of his condition. When he is excited, he waves his hands so much that I could not get a sharp photo of him doing so during the photoshoot.

Elijah was born with a condition called X-linked Myotubular Myopathy which mainly affects boys and causes profound muscle weakness. Children like Elijah can only breathe through a tube on their neck, feed through a tube in their stomach and go to sleep in the night with their eyes taped to keep them closed. Many children do not survive beyond one. Parents of boys with this condition do the best they can to squeeze every ounce of love they have in every micro-second of these precious boys’ lives.

Elijah’s Mum and Dad tell me of how proud and blessed they are of having him. In between the constant suctioning, feeding, cleaning and physiotherapy that they do for Elijah, there are buckets full of singing and playing and story-telling and reading and laughing. Tears come many times, of joy and pain, of hope and faith, and of trust in the complete goodness and faithfulness of God.

Even as strong Christians, they have many questions that remain unanswered. But despite those, they are holding on to God, always believing in times of doubt, always persevering in moments of exhaustion, and always thankful even when complaining seems justifiable.
Elijah gets to stay in Richard House Children’s Hospice for a total of 21 days per year. This means that for 3 weeks in a year, his parents can have some much needed rest from the constant medical demands of looking after him. They can get to sleep a full night in another part of the hospice without having to watch Elijah’s breathing and to suction fluids out of his nose and mouth every 10 minutes. They can have a lie-in in the morning knowing that Elijah has been in very good reliable hands throughout the night. They can even have the rarest evening out for a few hours and enjoy a meal by themselves.

Elijah’s parents are exemplary – in their devotion, love and care for Elijah AND for other people. Both of them are nurses and work part-time in London hospitals caring for others. They have learnt to refuse to live a life of fear; they have learnt to celebrate life in every aspect. Without fail, they have continued to celebrate Elijah’s birthday every single month and celebrate every single special occasion there is with him with great festivity in their small flat and with their precious circle of friends.

I have three healthy children and I’m the one who always feels like I have just received great encouragement and a touch from God every time I speak with them. I am deeply humbled. To Elijah: your progress is inspiring, your smile and excitement bring so much joy, your happy outlook in life despite everything is a testament to how much you are LOVED.

Elijah’s Dad has just completed the ASICS London 10K run {in an impressive 1:15:09 hours} to raise funds for Myotubular Trust and help them find strength for children with Myotubular Myopathy.

A call to action:
1. If you are reading this and you are the praying kind, please pray for Elijah and children that are affected by Myotubular Myopathy, specifically for a cure to be found quickly.
2. If you are the giving kind, charities like Richard House Children’s Hospice and Myotubular Trust which support families who have Elijah’s condition would benefit from your giving and help them find a cure more speedily.
3. Please share this blogpost to raise awareness of this condition and generate support for these charities.

Thank you for taking the time to read this long post and for sharing.

Postscript:
“Before I formed you in the womb I knew you, before you were born I set you apart… {Jer 1:5}” “For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be. How precious to me are your thoughts, God! How vast is the sum of them! Were I to count them, they would outnumber the grains of sand — when I awake, I am still with you. {Psalm 139:13-18}”