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Patients & Caregivers


"Emily is my strength, my hero, and my Warrior!"

Written by Kayleigh, Supporter, United Kingdom

"Emily is my strength, my hero, and my Warrior!"

Updated February 26, 2024

At 26 weeks gestation in 2014, I was told go home for a week and consider terminating my pregnancy. They told me the baby had abnormal tumours everywhere, they didn’t know what it was and what the future might look like. I went back to ask for more information because I didn’t know enough to make the tough decision. I was told they couldn't help me because they had never seen this before.

I decided to continue with the pregnancy. Emily was rushed to Sheffield Children’s Hospital within hours when she born where she was monitored for weeks. Emily had an MRI scan when she was a few days old, it showed the malformations inside and outside of her organs from her thighs up to her lungs, she also had a large port wine stain on her back.

When Emily was around 16 months old, she started to drag one of her legs when walking, and we were referred to Great Ormond Street hospital where she was diagnosed with lymphangiomatosis.  

Since receiving the diagnosis, we discovered that Emily had lymphatic and vascular malformations inside and outside every organ from her lungs down to her groin. It is particularly bad in her spleen, abdomen, and groin.  Emily also has Scoliosis and leg discrepancy. 

When Emily was around 5 years old, we were told that her lymphatic malformations had doubled in size. Emily started taking Sirolimus in the hope that her malformation would shrink. Thankfully, the medication started to work and the ones in her lungs disappeared completely the rest have either shrunk or remained the same.  

The medication weakened her immune system. For a year Emily was very ill with recurrent chest infections. Emily was given long term antibiotics for a year. 

Over the last few years Emily has had various issues as a result of this disease - internal bleeds, unexplained blood results, and compression on her organs and bowel causing pain, constipation, and several mobility issues resulting in her needing a wheelchair and back brace. 

Emily’s bone density started to decrease a few years ago and she now has 4 monthly bisphosphonate infusions to strengthen her bones. 

At 6 years old Emily became very poorly, she was anaemic and lost a lot of weight. She had several tests, but we never found the cause. Emily took bowel preparation medicine for a procedure and suddenly, she seemed to get better again. 

It took Emily over 6 months to regain the weight she had lost and to gain strength again.

Emily is now 9 years old and she has had tough few months. She started to have internal bleeding and was passing blood clots at least twice a week over a 2-month period. We never found the cause, but thankfully after a few weeks of resting the bleeding did stop. She became anaemic as a result of the bleeding and she has lost a lot of weight again. 

Following the episodes of bleeding Emily started getting recurrent pneumonia and was hospitalised several times.  

Emily complains of pain daily, but she continues to fight each day living with the symptoms and complications that come from having a rare disease like lymphangiomatosis and Gorham Stout Disease.