Race Day: 13 October 2019

Orpington couple to raise money for SOFT in memory of baby son who died at six months old by running the Royal Parks Half Marathon

Orpington husband and wife Sandeep and Sonia Sankoli, both 34, are planning to run the Royal Parks Half Marathon together this October to raise money and awareness around the rare chromosomal disorder – Trisomy 13 – that took their sons life at just six months old. They hope to raise over £500 for the charity SOFT, who provided “great emotional support” and “practical advice” through the most trying period of their lives.

After almost 10 years of marriage, Sonia and Sandeep were preparing to welcome a son into their loving family. However, 10 days after his birth they realized all was not right.

Sonia said: “Our son Dhian was diagnosed with full trisomy 13 (T13), a rare chromosomal disorder which affects 1 in 10,000 babies. Due to T13 being classed as a life limiting condition, doctors were unable to tell us how long our son would live – so we set out to try and cherish every moment we had left with him.”

She added: “Four weeks after Dhian was born, he finally made it home. We spent all the time we could with him. Six months with many hospital appointments and a surgery, but more importantly plenty of memories later, Dhian passed away due to respiratory failure. Considering the initial diagnosis, living that long showed his incredible spirit and even though he only lived for a short period of time he touched many lives.”

Sonia and Sandeep now hope to run their first half-marathon together in memory of their son, and in support of the charity SOFT – who provided “comfort and understanding” of their situation.

Sandeep said: “Taking on the daunting task of a half-marathon with the same fighting spirit Dhian lived with, we are training 2-3 times a week along with our usual fitness routines.”

With a healthy diet and regular training in the lead up to the race, they hope to make Dhian proud and complete the race in a good time.

Sandeep said: “We would hope to complete between 2-3 hours”

To donate visit: https://uk.virginmoneygiving.com/Dhian

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