My family heartbreakingly lost our two beautiful children, Ellie Mae and Caleb, to CLN2 batten disease.  Batten disease is a horrific neurodegenerative disease which takes away one by one all abilities, from sight, to walking, speaking and eating.  It is always fatal and there is no cure.  The life expectancy for CLN2 is 6 -12 years.  Ellie Mae died in 2015 aged 6 and Caleb died in 2019 aged 9.

The children are buried in an Anglican church graveyard in North Leeds.  The church has recently written to us explaining that after some years of lapse, they are now strictly enforcing the churchyard regulations as set by the Anglican Diocese of Leeds. They ask us to remove all ornaments and potted plants by the resting place, saying that graves should be left to grass over and be mown.  We are allowed only one sunken vase as decoration.

The regulations are in my opinion harsh and heartless to the needs of grieving parents, family and friends, including children who have lost their siblings, cousins and friends.  The ability to leave ornaments and see the pretty items others have brought has been a source of great comfort to me personally in my overwhelming grief.  As a Christian believer, I find the rules hugely burdensome and distressing. I do not feel the compassion of our Lord Jesus in them.

I have written letters and tried every avenue to start a discussion directly with the Diocesan Registry but while I have received personal empathy from others in the Church of England, I have not managed to find any openness to such a discussion. Hence I am starting this petition.

I understand the need for regulations, but plead from the bottom of my heart on behalf of all suffering parents, whose only way to physically care for their children anymore is to look after their grave - please can they be amended to allow us the right to make their resting places unique and appropriate for babies and children.  I know Ellie Mae and Caleb are safe in Jesus' arms, and that one day I will see them again.  Until that day all I can do is visit their resting place, that most sacred of physical places to me, and make it a place where their lives are celebrated.  Please do not take this away from me.