Sebby was born on the 19/9/11.
Initially we thought he was slow to develop. He took a long time to be
able to sit up unaided, roll over & developed plagiocephaly. 

Doctors
 performed an MRI. They did identify an issue, but we didn’t worry as we
 were told he looked well. But at a re-scan 6 months later we were
advised of suspected Mitochondrial Disease. We hadn't heard of it or its
 devastating implications. A disease that is life limiting & has no
cure.   

At the time Sebby was
still progressing with physio so we thought they might be wrong, but
over time, he developed epilepsy & cardio myopathy. He began to
regress, but to us Sebby was Sebby. He was such a sweetie. His smile
would light up a room, his thick dark hair & red glasses made him
stand out in a crowd. Everyone who had the chance to meet him remembers
him, he gave the best cuddles. 

Sebby
 became unwell on the 25/12/16 & on 23/1/17 surrounded by his family
 & in his mummy’s arms we had to say good-bye.  No parent should
have to say goodbye to their child. 

This
 is why we have decided to continue to support The Lily Foundation to
help them develop treatments &, in the future, a cure.  We would
like to say a huge thank you to everyone who has taken part in an event
for Sebby or who has donated. The Lily Foundation have been a huge
support to us in many ways & we want to help more.

Sebby
 is a huge part of our lives & even the youngest members of our
family know about him as we keep Sebbys memory alive. His biggest fan is
 his big brother who misses him immensely & tells everyone with
pride about his beautiful brother. The last year has shown how
supportive & generous family & friends are.   

Mum,
 Dad and big brother are truly thankful to you all. If you would like
more information on the condition, please visit The Lily Foundation's
website http://www.thelilyfoundation.org.uk/