Urban Challengers’ Story: Team Maya Simran

19.09.16 Categories: Patient stories, Supporter stories, News from the hospital,

Jay Siyani has rallied a 10-strong triathlon team to take on the second Guy’s Urban Challenge at Guy’s and St Thomas' Hospital. The three-part event, which takes place on Friday 30 September and Saturday 1 October, is no mean feat - it involves a 2.4km run, a 15km cycle, finished by a 29-floor stair climb (628 steps) of the world’s tallest hospital building – Guy’s Tower!

Jay takes time out from his training to share the reasons behind his fundraising efforts for Evelina London.

Jay’s story

‘On 2 April 2013, we welcomed our healthy beautiful daughter, Simran, to this world. Becoming parents for the first time, my wife Alpa and I were beaming from ear-to-ear.

‘In October 2013, Simran became unwell, vomiting and not eating, and eventually she was admitted to Evelina London. Within hours, she had gone into cardiac arrest and we had to make the most difficult decision of our lives.  Those few words will always play on our minds: “Please stop resuscitation”.

‘We walked out of the hospital and headed home, with an empty baby carrier, looking like ghosts.

‘Two weeks after the funeral in November, we received a call from the coroner to inform us of the cause of death.

Heart-breaking news of a genetic condition

‘Simran died of systemic carnitine deficiency, a genetic metabolic condition. We were tested at Evelina London, and the results confirmed that my wife and I were both carriers of the gene defect. This also meant any future children we might have could be affected, which was heart-breaking.

‘The condition is the inability of the body to produce a protein called carnitine, a transporter of energy to muscles and vital organs during periods of fasting. If it is not managed, the person becomes tired and lethargic and makes the organs work harder to a point where they fail. Due to Simran’s age, the effects were devastating.

‘In May 2014, we discovered that we were having another baby. The news was met with elation, but there was also anguish and caution.

‘We were constantly in and out of hospital, and Evelina London put together a birthing and testing plan for when the baby was delivered. We had decided that if it was a girl, we would name her Maya Simran, so Simran’s name lives on.

Baby Maya’s safe arrival

‘Maya was born on 7 January 2015, beautiful and healthy. We had two minutes with her before she was taken away for testing.

‘We were told that Maya is also affected by the deficiency and a regime was put in place to help manage it.

Tracking progress with Evelina London

‘Maya is now a healthy, beautiful and cheeky 20-month-old toddler. She takes medication three times a day to help manage her condition and she will have to do so for the rest of her life.

‘The hospital gave us support to help cope with Simran’s death, and guidance for Maya to live a normal life; they are always on the end of the phone if we need them. We can’t speak highly enough about Evelina London and the staff.'

If you want to support Jay’s #runspinclimb for Evelina London, you can donate to Team Maya Simran here.