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Asa's eyes


When Asa was 5 or 6 months old, Selam noticed something about his eyes.  Under certain light conditions, they would reflect light back, the way cat’s eyes do. 

“This child has animal’s eyes,” she said.

Neither Kuri nor I thought much of it.  It was amusing, we thought; a trick of the light; not a cause for alarm.

When I arrived in Ethiopia 3 days ago, Selam had just come across some information online that suggested this could be a sign of disease.  Whiteness at the back of the pupils is a characteristic of retinoblastoma, a cancer of the eye.  It’s rare, but more common in infants than adults.

Another sign of the disease is that in flash photographs with “red eye”, the eyes of affected children appear yellow or white rather than red. 

Going through old photos, Selam noted that this “yellow eye” phenomenon showed up for Asa in photos from 3 or 4 months ago.

The earliest photo of Asa showing "yellow eye". Note the contrast with Asa's companion Mekdas, who has red eye.


Yesterday morning we took Asa to an ophthalmologist in Addis Ababa who examined his eyes and corroborated the possibility of retinoblastoma.  In the afternoon he got an ultrasound, which confirmed the diagnosis.  Present in both eyes, it’s more advanced in the left eye than the right.

Left untreated, retinoblastoma can kill within 2 years.  Each year, 40 or 50 children are diagnosed in the UK, and 1 or 2 die.  As with other cancers, the prognosis depends largely on the stage of the disease.

In Asa’s case, we don’t yet know the stage of the disease.  A CT scan today should tell us more.  At the least, his vision is likely to be impaired.

But Asa shows no other signs of illness.  He looks and sounds like a normal, healthy child: inquisitive, playful, alert to everything around him. 



Within the last two days he’s made great progress in getting around on two feet, yesterday walking across the living room holding his mother’s hand. 

He’s begun to say, “Mama,” using the word to call Selam to him, or as a response when she says his name.

It’s remarkable to be told by a doctor that your child losing his sight is a good outcome.  It will take some time for us to see things from this perspective. Right now, scenarios worse than blindness are difficult to contemplate.

On Monday we’ll fly to England to seek treatment there.

We’re hoping and praying that Asa’s sight will be preserved.  And when we reflect on it, we recognize that we would love him just as much had he been born blind.

Comments

  1. We love little Asa so much, and hope and pray for the best for him. Love to you all.

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  2. Jed - We are so sorry to hear this, and sending you three huge hugs from Delhi. We will be thinking of you during your time in the UK. Love, Em and Adam

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  3. Wow- mama's instinct sure paid off here! I am sorry you are facing a scary health crisis with Asa, but I'm very glad that it was caught and can be treated. I'll keep you in our prayers. He's a handsome little thing!

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  4. Jed - very sorry to read this. He is a beautiful little boy. We are thinking of you and hoping for the best. We send you lots of strength and love. Imogen x

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  5. Jed - so sorry to hear that you and Selam have received such difficult news. Sending prayers and thoughts that all goes well in the UK for you and your beautiful boy. Much love. Indira

    ReplyDelete
  6. In the photo with the tambourine, Asa's smile looks just like our grandfather Tommy's. My heart is with you & Selam as you take him to the specialists this week.

    ReplyDelete
  7. Jed and Selam
    We wish you a safe journey to the uk and send positive energy your way as you seek treatment. Asa is indeed fortunate to have strong and loving parents. We love you all. Cari Kenny and Miles

    ReplyDelete
  8. All three of you will be in our thoughts and prayers. Be brave. Peter and Betsy

    ReplyDelete
  9. Dear Jed,

    I'm Madi from India, My daughter has been diagonised with Retinoblostoma and currently we are undergoing treatment .
    It was found found when whe was 6-7 Month old when we were in USA , then we flew back to India for treatment .

    Can you please share your contact details .

    I wish speedy recovery of your kid .
    Thanks !
    Madi
    madisudhan@gmail.com

    ReplyDelete

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