Sophie Thomas, Interim chief executive of The MPS Society said: “Ultimately, recognition would help professionals understand the condition, it would improve access to support, encourage investment in research and make sure childhood dementia is considered in policy and service planning.”<\/p>\n
A DHSC spokesperson said: “Neurodegenerative conditions such as Sanfilippo syndrome have a devastating impact and our thoughts are with Leni and her family.<\/p>\n
“We are making sure patients with rare diseases get a definite diagnosis faster, while improving access to specialist care, treatment and drugs.<\/p>\n
“At the same time we are working hard to find new ways to slow down the progress of dementia, speed up diagnosis and improve our understanding of the disease.”<\/p>\n
Meanwhile, for Leni, there is a possibility of taking part in a clinical trial later this year.<\/p>\n
Emily said: “For the first time since Leni’s diagnosis we actually have some hope for the future. <\/p>\n
“We have received such a huge amount of support and generosity from people and there is now real hope of Leni accessing a clinical trial that could change her life.”<\/p>\n
Follow BBC Kent on Facebook, external<\/a>, on X, external<\/a>, and on Instagram, external<\/a>. Send your story ideas to southeasttoday@bbc.co.uk, external<\/a> or WhatsApp us on 08081 002250.<\/p>\n