![\"A](\"https:\/\/www.familyfund.org.uk\/wp-content\/uploads\/2025\/08\/Summaira-children-864x1024.jpeg\")
<\/figure>\n\n\n\nLife with Haris<\/h2>\n\n\n\n
At the age of 4, when his eyesight began to deteriorate, Haris was diagnosed with Juvenile Batten disease; also known as juvenile neuronal ceroid lipofuscinosis (JNCL). <\/p>\n\n\n\n
This is a rare, inherited, and progressive neurodegenerative disorder that mainly affects children and adolescents. It causes vision loss, seizures, cognitive decline leading to hallucinations, severe dementia and motor dysfunction. It has no known cure and can mean a shortened lifespan. <\/p>\n\n\n\n
Haris’s increasing needs lead to rising costs for the family. Azam has retrained for work to cover bills. Though Summaira wants to work and earn money, the demands of caring for Haris make this very difficult. Even household necessities like beds and washing machines become unaffordable if they break. Family holidays are out of reach.<\/p>\n\n\n\n Summaira said: “I do his feeding, his drinking, help dress him. He’s a tall lad and his mobility has got so bad that you have to be very patient. <\/p>\n\n\n\n “He’s such a lovely boy, sometimes he says, ‘Mum, don’t worry, I am a big boy now. <\/p>\n\n\n\n “He wouldn’t want to be this way, I don’t want him to be this way, so this is something that we all have to be there and do together.”<\/p>\n\n\n\n Life is made easier for Summaira’s family when Haris has access to things which keep him calm and occupied. <\/p>\n\n\n\n Alongside the iPad, the family had a grant for a washing machine- a vital item they couldn’t afford to replace that also calms Haris down. “He is soothed by the washing machine,” Summaira says. “He loves washing the big blanket and he likes to put it in. Haris used to take it out, put it in a basket and hang it outside but not anymore because of his mobility.” <\/p>\n\n\n\n These practical grants from Family Fund make a difference every day. “They are trying to make those small happy moments in each person’s house. You don’t know what’s going on behind closed doors, you don’t know how families are struggling.”<\/p>\n\n\n\n You can help make a difference to families like Summaira’s. Donate as little as £5<\/a> to help make their lives that little bit easier.<\/strong><\/p>\n\n\n\n\n\n\n\n\n\n \n\n Donate today\n <\/a>\n<\/body><\/html>\n","protected":false},"excerpt":{"rendered":" Every moment of calm counts for Summaira and her family. Every occasion when her 18-year-old son Haris is peaceful and happily absorbed by some activity, Summaira, husband Azam and their three other children Maria, Zara and Hanna, have the chance to take a breath and relax in their Bradford home. When summer comes, the family […]<\/p>\n","protected":false},"author":55,"featured_media":19152,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_oasis_is_in_workflow":0,"_oasis_original":0,"_oasis_task_priority":"","_mixd_wp_review_post_reminders":[],"_mixd_wp_review_date":0,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[7,1],"class_list":["post-19138","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-family-stories","category-news"],"acf":[],"yoast_head":"\n![\"A](\"https:\/\/www.familyfund.org.uk\/wp-content\/uploads\/2025\/08\/Summaira-with-son-755x1024.jpeg\")
<\/figure>\n\n\n\nPractical grants that make a big difference<\/h2>\n\n\n\n