Scots five-year-old suffering with rare condition able to make memories with family in hospice

dailyrecord.co.uk:

The constant worry that their little girl will catch a cold and fall desperately ill doesn’t fill the waking hours of parents Lyn and Ed French when they are busy making memories together at children’s hospice Robin House.While enjoying special respite breaks at the CHAS hospice in beautiful Balloch with five-year-old Jessica and her big brother, James, the couple have been able to experience the kind of family ‘firsts’ that they hadn’t dared to dream possible.Jessica has an extremely rare, complex condition which means that she cannot walk or talk, and is very small for her age.She’s a little girl whose smile can light up a room.So, it’s only fitting that Jessica French is the face of the ‘Little Rays of Sunshine’ appeal, in which the charity is urging Scots to help it provide precious respite stays for more children like her and their families.The appeal, launched last week, is in response to research conducted by CHAS, which found that more than two thirds (69 per cent) of families supported by the charity and who took part in the survey, identified gaps in the care and support they receive for their dying child.The findings highlight the urgent need for more consistent social care support and more respite care for families who are often at breaking point.The ‘Little Rays of Sunshine’ appeal aims to raise vital funds so that more families can enjoy special breaks together at CHAS’s two hospices – Robin House in Balloch and Rachel House in Kinross.Currently, there are more than 16,700 babies and children with life-shortening conditions across Scotland – and CHAS is determined to help as many families as possible enjoy precious time together filled with happiness and joy.For Lyn, going to Robin House with her family is