Fionah Scimeca,6, has been battling a spine condition and endured 20 operations so she can fulfill her dream of becoming a cheerleader.
She was diagnosed with Klippel-Feil syndrome at five months old
Brave little Fionah was diagnosed with Klippel-Feil syndrome when she was only five months old. Klippel-Feil syndrome causes an abnormal fusion of two or more bones in their spine.
Fionah’s mother shares, “Everyday life has been absolutely horrific for Fionah, she has had constant operations throughout the six years of her life.”
“Watching her recover from each of the 20 gruelling operations has been difficult but it puts such a smile on my face when I see her cheerleading.
“Fionah can now do tumbling and practices all the time at home.”
She had operations to assist a magnetic rod in her back
Three months after she was diagnosed with the disease, operations were started on her back to fix her condition. Since then, she has had operations every 4 months in order to assist a magnetic rod that’s implanted in her back.
Her mother adds, “She has huge scars on her back due to her operations but this doesn’t stop her from being upbeat at all.
“We have been to the beach and she is confident to get her back out which makes me so proud as her mum.
“She has learned how to ride a bike and a scooter, she even swims but she still needs armbands.
“She even knows to not cry when she has an iv drip and she’s fully aware of what x-rays are now, as she has them frequently.”
Fionah and her mother are both looking forward to the time when the rod implanted in her back will be enough to support her body so that she can live a normal life.
Go to the next page to learn more about taking care of children with chronic diseases.
How to take care of children with chronic diseases
Taking care of a child with a chronic disease can be difficult at times. Especially since it’s heartbreaking for a parent to see their child suffer from a disease. That’s why it’s very important for parents to know how to take care of a child with a chronic disease, such as Fionah’s.
Here are some tips for parents when it comes to taking care of children with chronic diseases:
- Get yourself involved and talk to your kids about it. Be active when it comes to your child’s condition. Be with them for any therapy sessions, and ask their doctor about information about their treatment so that you can explain it to your child. Letting them know of how they can be better will make them feel more positive.
- Plan ahead. Caring for a child with a chronic condition means that you have to plan ahead, especially when it comes to family activities or even emergencies. Teach a family member or a close friend how to take care of your child in your place in case of any emergencies etc.
- Give them choices on their treatment. Talk to your child’s doctor and ask about alternatives and let them explain the pros and cons. Make sure to communicate this to your child so that they will have options when it comes to the treatment that they’ll be receiving.
- Encourage maningful relationships. Having a close friend is very helpful in keeping your child positive. Encourage them to make friends and make their friends feel appreciated that they’re making your child happy.
- Stay positive. It’s important to always keep positive, even if the situation is getting you down. Always show your strength to your child so that they feel that their condition isn’t something that should make them pity themselves. Keeping positive is the best way of dealing with a chronic condition.
Sources: thesun.co.uk, themirror.co.uk
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