By Liana Jacob


MEET the brave twin baby girls who were diagnosed with a rare form of eye cancer just days apart and have had to undergo TWELVE MONTHS of chemotherapy between them.


Stay-at-home-mum, Maryann Oakley (39), from Pennsylvania, USA, was diagnosed with Retinoblastoma at just six-months-old, a rare type of eye cancer that usually affects young children under the age of five. As a result, she has had to have one of her eyes removed and now wears a prosthetic eye.

Eve pictured inpatient at hospital, very tiny and fragile.
MDWfeatures / Maryann Oakley


In 2017, Maryann fell pregnant and six-weeks into her pregnancy, she and her husband, Nathan, found out they were going to have twin girls. Due to the likelihood of her passing down the retinoblastoma gene, Maryann decided to do an amniocentesis at 16-weeks, a medical procedure used in prenatal diagnosis of chromosomal abnormalities and foetal infections. The results revealed that their twins were both carrying the same gene.


In December 2017, a few days after their twins, Ella and Eve, were born. A few days after they were born, Eve stopped eating and was showing signs of lethargy. On January 1, 2018, Maryann and Nathan rushed her to the hospital, where they did exploratory surgery and found out her bowel had been severely twisted, a condition known as volvulus.

Eve pictured inpatient at hospital.
MDWfeatures / Maryann Oakley


Shortly after the surgery her eyes were examined, and she was diagnosed with bilateral retinoblastoma. A few days before, her twin sister Ella had been diagnosed with the same cancer.


Ella and Eve have since undergone six months of gruelling chemotherapy each, which took a toll on the twins. Their journey is still ongoing, and the twins’ progress has been documented on social media by their mum.

Eve pictured in the NICU, still very sick from septic shock.
MDWfeatures / Maryann Oakley


“I had bilateral retinoblastoma shortly after birth; I was diagnosed at six months. My mum noticed a white cloud within my eyes and immediately took me to see a doctor,” Maryann said.


“I received laser therapy, no chemotherapy; my right eye had to be removed. No other member of my family had retinoblastoma, it was spontaneous.

Eve pictured shortly after emergency exploratory surgery on abdomen. She became puffy from all of the medications and on life support.
MDWfeatures / Maryann Oakley


“So, I knew there would be a chance that I could pass this onto our children. After long discussions and consideration, we decided that we would have one child of our own. We found out six weeks after conception, that we were carrying twins.


“I decided to do an amniocentesis at sixteen weeks. After weeks of waiting for the results, we found out that they were both carrying the Retinoblastoma gene.

Ella and their dog, Chee Chee, shortly after birth.
MDWfeatures / Maryann Oakley


“Shortly after birth, each twin showed tumours in their eyes, confirming the retinoblastoma did in fact develop. They were born at just over thirty-seven weeks.


“Eve had her twisted bowel prior to being diagnosed with tumours/Retinoblastoma, and almost lost her life due to the disconnection of her intestines and multiple other complications.

Ella and Eve minutes after birth, before their world was turned upside down.
MDWfeatures / Maryann Oakley


“It was only ten days of being home (after birth), Eve stopped eating and was showing signs of lethargy. We took her to hospital, where they did exploratory surgery, and located the severely twisted bowel.


“Shortly after, her eyes were examined, and a tumour was found. Everything was happening so fast. Every day we kept getting horrible news about our twins.

Eve pictured (back) getting a quick break from her feeding tube with Eve (front).
MDWfeatures / Maryann Oakley


“There were no breaks and hardly time to breathe. This went on for months and I just kept clinging onto hope that everything would be ok.


“Eve had septic shock and contracted three infections while in the hospital, all while going through chemotherapy.

Nathan and Eve pictured on a school bus ride.
MDWfeatures / Maryann Oakley


“Ella was at home preparing to begin chemotherapy. Our world was turned upside down. We had no idea whether Eve would survive or not and both children needed to endure chemotherapy.


“All of this happened shortly after birth, so we were never really able to enjoy them just being at home and healthy.

Eve pictured (left) with Ella (right), shortly after Eve came home from hospital.
MDWfeatures / Maryann Oakley


“Multiple holidays were spent apart as Eve was two hours away inpatient and someone needed to be at home with little Ella.”


Maryann says that while she was terrified, she had to keep a brave face on for her daughters, to help keep them strong and this was made easier through the constant support of friends, family and even strangers.

Ella pictured at home enjoying some time outside.
MDWfeatures / Maryann Oakley


As well as battling cancer, Eve has also been diagnosed with auditory neuropathy, a variety of hearing loss in which the outer hair cells within the cochlea are present and functional, but sound information is not fully transmitted to the auditory nerve and brain properly.


Due to the demand of surgeries, tests and hospital appointments, Maryann has not been able to return to work and Nathan has returned to work part-time. They both decided to set up a Go Fund Me page for donations to help with the medical costs.

Eve pictured inpatient at hospital, shortly after having a line placed to receive medications and chemotherapy.
MDWfeatures / Maryann Oakley


“Not knowing what was going to take place, we were terrified.  I also carried a lot of guilt that this had happened to these two wonderful and beautiful babies,” she said.


“Having to see your child go through chemotherapy is so difficult. No one wants to see their new-born baby so sick or suffer.  Handing off your child to a nurse for constant anaesthesia or procedures is something we will never forget.

Eve pictured getting ready to go under anaesthesia for a procedure.
MDWfeatures / Maryann Oakley


“Not knowing how this will turn out was so petrifying and also having no control of the outcome is overwhelming in itself. Friends and family were very supportive and helped us in so many ways.


“But I couldn’t let them know how worried their Mum and Dad were. I try to make every day feel as normal and happy as possible.

Ella (back) and Eve (front), shortly after Eve came home from hospital.
MDWfeatures / Maryann Oakley


“We posted pictures on social media about two months after birth. We kept their medical history between friends and family.


“When word started to spread that they were sick, we decided to post updates on social media so that others could receive updates on the twins.

Ella pictured (left) with Eve (right), while Eve was inpatient for six months.
MDWfeatures / Maryann Oakley


“We were/are surrounded with love and support. All comments have been positive. These comments have really helped us along this journey.


“Retinoblastoma does not just go away with treatment. The eyes grow until they are five-years-old.  So, the treatment and follow ups are ongoing.

Ella with Maryann at their home, while she was undergoing chemotherapy.
MDWfeatures / Maryann Oakley


“Honestly, some days are wonderful, and some days are quite tough. There is a lot of anxiety not knowing what the future holds for these two.


“My biggest worry is that a new tumour/s will develop, and further treatment will be needed.  If so, what treatment will they need, we just don’t know.

Maryann and Nathan pictured with Ella (right) and Eve (left).
MDWfeatures / Maryann Oakley


“I wonder if they will be visually impaired. I worry a lot about Eve. Will she have further intestine issues? Will she be able to hear laughter, music, her sister talking to her, or Mummy and Daddy reading to her?


“I wish I could say it gets easier.  It is so hard to see a child suffer. As we speak, my daughter, Eve, is currently undergoing anaesthesia having her tumours checked.

Maryann and Nathan pictured spending time with Ella (right) and Eve (left) while Eve was inpatient.
MDWfeatures / Maryann Oakley


“While family and friends are very supportive and full of love, I still find times where I feel alone.  I have found that using social media support groups has really helped me.


“Retinoblastoma is quite rare, and it is nice to be able to reach out to others who are in a similar situation. We make sure to enjoy every single moment with them. I hang on to hope. Hope is what got our family through all of this.”


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