Specialist care helps Samira attend college!

Samira is a happy, intelligent young lady who is currently supported by our team at Children’s Complex Care. With a cheeky grin and a wicked sense of humour, her sparkling personality shines through. But Samira lives with a rare genetic condition called Freeman-Sheldon syndrome, meaning her muscle fibres were affected from a young age and didn’t develop properly. This impacts parts of Samira’s body, including her hands, which were fused together.

Despite her health challenges, Samira’s attended school from primary age, and has remained determined to continue her studies at college. Throughout her life, one thing has remained the same – she won’t let her complex needs stand in the way of leading a happy life!

Through our person-centred approach, Samira’s support team at Children’s Complex Care were able to identify her goals and put in place the right care and support that ensures we can meet Samira’s needs both at home and at college!

Living with a rare condition

Since Samira’s hands were fused together and her face was underdeveloped, she’s had two major operations to help separate her hands and reconstruct her face. These procedures have provided functional improvement as she’s developed into adulthood.

As well as having underdeveloped muscles, Samira relies on a gastrostomy tube (PEG) to assist with feeding. She also has a tracheostomy to connect her to a ventilator, to help with her breathing difficulties. As she can’t swallow saliva properly, her tracheostomy also removes mucus from her airways.

Unfortunately, these medical procedures have affected Samira’s speech, and she can’t communicate verbally. This barrier made it difficult for Samira to express herself and for others to understand her emotions and behaviours. To overcome this, Samira uses an iPad to convey messages and interact with those around her. This has proved a real success and empowers her to socialise, express herself and make choices. She often uses her iPad to make jokes with Edith, her Healthcare Assistant, or to share her favourite football team’s results!

One of her main interests is football and her favourite team is Manchester united. She follows football matches and likes engaging in discussions about the players. Samira also plays football at her college; she shares on her iPad “I’m the left back”. Samira also enjoys listening to music, particularly Drake. These passions and interests bring joy to her life and create memorable experiences she treasures.

In both secondary school and college, she’s utilised her iPad to communicate effectively with everyone and as a result, she’s learning valuable life skills.

Emotional support

Samira has not only faced physical challenges, but she’s also experienced emotional struggles throughout her life. Having worked closely with Samira for several years, her Healthcare Assistant, Edith, shares her mental health journey: “Samira has grown into such a lovely person, but during her younger years, she experienced slight depression. Even as she became a young adult, she was feeling a bit low, questioning “why can’t I be like others?”. She would often express those feelings to me.”

Edith has shown compassion towards Samira to help her cope with these emotions and encouraged her to embrace her true, authentic self. “To comfort her, I explain that we are all different and special in our own ways. I talk to the other Healthcare Assistants to let them know when Samira is feeling low, so they can support her and boost her confidence as well.”

Edith has been a shining light for Samira’s family as she helps manage Samira’s complex needs. She’s worked with Samira and her family to develop a routine, offering much-needed structure to their lives.

To promote Samira’s inclusivity and prioritise emotional wellbeing, Edith and her teachers also actively involve Samira in their decision-making discussions. This is especially important as Samira reaches adulthood and prepares for future transitions and life skills.

Developing a personalised care plan

In 2012, Samira’s life took a positive turn when she was referred to Children’s Complex Care due to her health challenges and the need for round-the-clock care.

Our dedicated support teams met with Samira’s family to create a personalised care plan tailored for Samira’s individual needs. This plan involved the clinical care and governance needed to keep her healthy as well as helping her with her social and emotional needs. Doing so has allowed Samira to pursue her education while receiving flexible, expert support.

From personal care and assistance in the morning, to equipment checks and supporting with the journey to college – Edith is there alongside Samira providing reassurance and clinical expertise.

During college, Edith blends into the background, equipment trolley in tow. This has everything Samira needs to remain healthy and well-cared for including her ventilator and suction machine. She even uses it to cart her school bag and lunch around!

When Samira gets home from college, she likes to have a giggle with Edith by telling jokes. It is during these moments where Samira’s personality shines through. Even though Samira is busy studying, she always finds time to take part in her passions.

“During the evening, I make her evening meal, then we do suctioning, a nebuliser, medication and physiotherapy exercises.” Shared Edith. She continued, “This routine gives Samira a clear structure for the day and helps her to enjoy her life without worrying about the medical stuff – that’s for me to worry about!”

Quote from Edith, Healthcare Assistant - "At college, we talk to Samira to give her a voice, we don’t talk about her – we get her involved in decisions. "

Academic achievements!

During secondary school, Samira’s teachers and Healthcare Assistants played a significant role in empowering her academically, which has had a positive impact on Samira’s confidence and self-esteem. This has enabled her to achieve academic success and provided her with a sense of accomplishment.

And Healthcare Assistant Edith has always had full confidence in Samira’s abilities: “She’s achieved many certifications at school, and she is very good at PE. Samira doesn’t want her disabilities to stop her from doing what she wants!”

Because of her complex needs, Samira currently attends a special needs college that understand her challenges and ensure she is never excluded from any subjects or activities.

Despite her needs, she’s never phased by anything that’s thrown her way and is putting her intelligence, new-found skills and college experiences to good use. Her academic achievements alongside support from Edith and her other Healthcare Assistants, has seen Samira grow in confidence and flourish into a bright, independent young adult!

Find out more!

Our Children’s Complex Care team help families like Samira’s navigate caring for a child with complex needs every day. If your child, young person or client would benefit from specialist care at home, get in touch by filling out our quick form.