Hello!
My identical twin James and I were born in 2004, 10 weeks early. We are survivors of twin-to-twin transfusion syndrome. Because of this condition, I am profoundly disabled , quadriplegic with severe spastic cerebral palsy, epilepsy and profound learning difficulties. We live with our Mum & Dad in Chester in the UK.
Highs and Lows
Like many people, I have a mixed life. I smile a lot and I love cuddles . But sometimes life is very difficult. My body is in constant tension because of the severity of my condition. And I have seizures most days. It hurts a lot, but my Mum and Dad tell me I’m very brave.
I love being with my friends and family - especially my brother James. He has severe learning difficulties and is on the autistic spectrum. He makes me laugh. Like a lot of identical twins, we have a very special bond.
Twins
Here’s a bit more about me and my twin James.
Morgan
- Nickname: Mo
- Likes: cuddles, good music, being talked to, hot baths
- Dislikes: sudden noises, being in pain, bumpy journeys on the school bus
- Main challenges: GI dystonia, severe spastic cerebral palsy, epilepsy, no speech, vision impairment, profound and multiple learning difficulties and more
- Superpower: being gorgeous
James
- Nickname: Jamesy
- Likes: car numberplates, jigsaws
- Dislikes: changes of plan
- Main challenges: autistic spectrum disorder, anxiety, severe learning difficulties, short gut syndrome, epilepsy
- Superpower: knowing everyone’s car
TTTS
TTTS pregnancy,Morgan and James are survivors of Twin-to-Twin-Transfusion syndrome. This condition can only occur in identical twin pregnancies and involves incomplete splitting of the placenta. This means that some blood, carrying oxygen and nutrion flows from one twin to the other, instead only from mother to baby. This effectively means that one of the twins receives secondhand blood.
Mo and James were born in 2004. Medicine has improved since then, but treatment (e.g. laser therapy) remains risky and expensive. Without help, there is a very serious risk that one or both babies will die before birth - or even if they survive, they may be extremely unwell and/or disabled. TTTS babies tend to be delivered prematurely and are often sicker than other babies born prematurely. More work is needed to improve survival rates and outcomes.
If you are concerned about this condition, please consider supporting the Twins trust TTTS Appeal. There are several Facebook support groups you may wish to connect with, if affected by this condition personally.