4-year-old Nicole Rich is an adorable little girl. With a cute smile and bright eyes, it’s almost unthinkable to know that she has been diagnosed with a terminal illness.
Patient with the disease rarely live past their teens
Little Nicole has been diagnosed with Batten disease, an incurable condition wherein sufferers will eventually start losing their sight and their motor skills. Patients with Batten disease rarely live past their teens.
Nicole’s parents, Gail and Matthew Rich, said that their “world will never be the same” after learning that their daughter has Batten disease. Gail said, “There are simply no words to describe the moment you find out that you will outlive your child.”
This is why her parents have resolved to make the most of their time together. They made a bucket list for their daughter which includes visiting horses at a horse therapy centre, and visiting the London Eye since they said that “she is a daredevil so she would love being up that high.”
Her parents realised that something was wrong when she still hadn’t started speaking when she was 2 years old. When she was three, she was diagnosed with Global Developmental Delay, Epilepsy and short stature. Her condition worsened and that’s when doctors decided to take a blood test which showed that she indeed had Batten disease.
In spite of the grim diagnosis, Nicole and her parents are being hopeful “We can’t make her illness go away but we can create amazing moments for her, and special memories for us.”
There’s still a glimmer of hope
In what some people might call a Christmas miracle, there’s still a glimmer of hope for Nicole. She has been chosen as one of 43 people worldwide who will undergo a radical new treatment to slow down the effects of Batten disease.
The treatment will involve attaching a device to her skull that will provide her with hormones that her body needs.
The treatment isn’t perfect, as it won’t help with her deteriorating eyesight, but it should hopefully give their beloved daughter a few more years which should be enough for doctors to find a cure.
Go to the next page to learn more about caring for a child diagnosed with a terminal illness.
Caring for a child diagnosed with a terminal illness
It’s beyond heartbreaking for a parent to hear that their child has been diagnosed with a terminal illness. But regardless of the diagnosis, there have been some cases wherein a patient diagnosed with a terminal illness has recovered from their condition.
In spite of the grim diagnosis, parents should do all that they can in order to care for their child so that they can enjoy their life for as long as possible. Here are just a few things to keep in mind if you or a loved one should happen to care for a child diagnosed with a terminal illness:
- Know what type of hospital care they need. There are different types of treatment available to someone diagnosed with a terminal illness. These include palliative care to relieve the symptoms of their treatment, and hospice care which is usually provided for patients that will only live six months or less. Talk to your child’s doctor to know which one suits your needs.
- Talk to your child about it. It might be difficult, but you need to talk to your child about the reality of their condition. You don’t immediately have to tell them about the terminal diagnosis, and you can do that at your own pace. The important thing is to let your child know how much you love them, and help them with their fears.
- Cater to their needs, but still practice ‘normal’ parenting. Even if a child has been diagnosed with a terminal illness, it still isn’t a license to give them all of the things that they want. Setting limits on what they can do is healthy, and makes them feel ‘normal’, in spite of their condition.
- Encourage your child to make friends. Making friends is important for your child to feel better and not to feel like they’re alone in the world. Encourage them to create meaningful relationships and to interact with people.
- Take care of yourself. It’s hard to take care of your child when you’re not taking care of yourself. That’s why it’s also important to look after yourself, especially in these trying times. Talk to your friends, family, or a counsellor to help you handle your feelings better. You can also ask someone else to take care of your child if you need some time for yourself.
Sources: chroniclelive.co.uk, thesun.co.uk, cancer.net
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