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Alfie is a vibrant, cheeky young boy living with Pallister-Killian Syndrome (PKS). He has a care package that includes overnight care five nights a week, provided by a team of dedicated paediatric care assistants.
Overnight care is life-changing for families with children who have complex care needs. Night care means parents can sleep and fully rest, knowing their child has the specialist care they need to sleep safely.
For Alfie’s mum, Heidi, this support has improved the entire family’s quality of life.
Pallister-Killian Syndrome (PKS) is a rare genetic condition that affects cognitive development, mobility, and overall health. For Alfie, PKS means he requires 24-hour care, from his family and Superior Healthcare.
PKS is caused by tetrasomy of the short arm of chromosome 12 (12p), meaning people with PKS have four copies of 12p instead of the usual two in some of their cells.
His condition impacts multiple aspects of his daily life but doesn’t stop him from being his cheeky self.
Heidi and Aflie’s family and friends are incredibly passionate about raising awareness of Pallister-Killian Syndrome and giving back to the charities and hospitals that have supported them.
They understand the highs and lows of caring for a child with complex needs, and this fuels their drive to give back to children and their families who need a little extra cheer. Heidi and her clan are regular faces on the Rainbow Ward, supporting East Kent Hospitals Charity by arranging Christmas goodie bag drops, and princess visits.
Heidi dedicates her time and energy to uplifting families in need, and fundraising for PKS UK, hospitals, and domestic violence charities. Through their Alfie & His Army Facebook page, they share Alfie’s genetic journey and offer support to other parents affected by PKS.
Are you looking for a care package for yourself, a client, or a loved one? Get in touch!
Contact a professional care provider such as Superior Healthcare, specialists in overnight care, daycare, 24-hour support, and nursing care for young people and children with disabilities and complex care needs.
The cost of overnight care varies for each individual, as care needs differ from person to person. We provide a cost-effective care solution, tailored to meet each client’s unique goals and requirements.
Superior Healthcare supports people, and families, who are self-funding care or using a personal health budget.
If your care package is commissioned by an NHS ICB, a county council, or a Case Manager or Financial Deputy, we can talk to them about moving to us today.
To enquire about the cost of a package, call us at 01227 774873.
Pallister-Killian Syndrome (PKS) is a rare genetic disorder caused by tetrasomy of chromosome 12p, meaning individuals with PKS have an extra pair of the short arm of chromosome 12 in some of their cells. This condition affects multiple areas of development, including cognitive function, mobility, muscle tone, and organ health.
Children with PKS often experience hypotonia (low muscle tone), distinctive facial features, intellectual disabilities, and sometimes seizures or hearing and vision impairments. Because PKS is a mosaic condition, its severity varies—some children may have significant medical needs requiring 24-hour care, while others may have milder symptoms.
Due to its rarity, families affected by PKS often receive support from specialist at-home care providers and charities dedicated to raising awareness of complex genetic conditions.
At Superior Healthcare, our specialist paediatric care assistants provide dedicated, round-the-clock support so that children with PKS and similar rare genetic disorders can live safely, happily and comfortably in their family homes.
Families caring for a child with Pallister-Killian Syndrome (PKS) can access a range of charities, parent support groups, and funding resources dedicated to helping them navigate the challenges of this rare genetic condition.
PKS Kids UK is a parent-led support group dedicated to raising awareness and providing peer support. They offer online forums where families can share experiences, lead PKS awareness campaigns and fundraising events, and provide guidance on genetic testing and diagnosis.
Unique – The Rare Chromosome Disorder Support Group is a leading UK charity supporting families affected by rare chromosome disorders like PKS. They provide personalised support and medical information tailored to specific rare conditions, access to an international community of families with similar diagnoses, and webinars, family events, and research updates to keep parents informed.
Contact – For Families with Disabled Children is a UK-wide charity offering advice on education, benefits, and respite care for families raising disabled children. They help with understanding and applying for financial benefits such as Disability Living Allowance (DLA) and Carer’s Allowance, navigating NHS and specialist healthcare services, and connecting parents with local support groups and events.
Together for Short Lives supports families of children with life-limiting and complex medical conditions. Their services include guidance on accessing palliative care and hospice support, information on respite care options for families needing a break from full-time caregiving, and a helpline offering advice on navigating medical and financial assistance.
Scope provides legal advice, advocacy, and employment support for families of disabled children. They help with challenging Education, Health and Care Plan (EHCP) decisions and securing the right educational support, advocating for disability rights to ensure equal access to services, and providing employment support for parents and carers managing work alongside caregiving responsibilities.
