Marshall Hendrix Spear was born on 5th January 2016, and passed away on the 31st of December 2016.

He was born with a very rare genetic condition called walker warburg syndrome, which is an incredibly severe form of muscular dystrophy as such, he was expected to have a very, very short life.

He was born via c-section on the 5th of Jan then transferred to Alder Hey on the 6th of Jan so that he could have a shunt fitted. The surgery went well but, he struggled with his breathing and was taken to ICU where he remained for just short of a week before being moved to the neurology ward where we spent the next 16 weeks. During this time a lot of focus was on our sons medical needs, which were complex and many. While we received a little support and advice regarding play and quality of life, we were not given any help or training in this regard, which forced us to research and learn aspects of this on our own.

Marshall was on a long waiting list for portage services and as a result only received 2 sessions. While incredibly rewarding and enlightening, the few techniques and skills we learned as parents from these 2 sessions would have been invaluable and should have been provided as early as possible. We suspect this is the case for many children born with severely life limiting conditions.

Marshall spent more than half of his life in hospital being treated mainly for respiratory illnesses and seizures, often both. Toward the end of his life we had acquired various toys and play equipment and gained knowledge of how to improve his quality of life. If we could have our time again with our son, even a shred of this knowledge and a few pieces of play equipment would have improved our son’s quality of life dramatically from beginning to end.

We have raised £500 already and our goal is to raise another £500 so that we can create 10 boxes in total, of sensory toys and equipment which we plan to give to babies born with a severely life limiting condition to help families bond and further enjoy their short time with their child through play.