When Shannon Cox gave birth to her second child, a daughter called Hope, it was believed she was fit and healthy despite being born slightly early. However, after a few months, it became noticeable that she was not using her right hand.
Initially her GP assured Shannon, 27, and her husband Joshua, 27, of Exeter, that it was 'normal'. However, trusting their gut instinct that something was wrong, her parents persisted to seek answers.
Hope was eventually diagnosed when she was 14 months old as having had a stroke during pregnancy and, as a result, has hemiplegic cerebral palsy. It means she cant use the limbs on her right side properly and cant use her hand at all.
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Since the age of nine months old, Hope has been receiving different therapies including physiotherapy, hydrotherapy and music therapy. She will receive her first occupational therapist appointment later this month
Although the treatment so far has helped with her motor skills, Hope still cannot open her hand from a fist. She is now almost two and in October will begin NHS funded Constraint Induced Movement Therapy (CIMT), a physiotherapy technique used to improve a persons upper limb function following neurological damage, such as a stroke.
During CIMT, the unaffected 'good' arm is believed to be constrained with something like a mitt for the duration of the appointment. Hope will receive one appointment a week for six weeks.
Intensive CIMT therapy - where patients attend a clinic for three hours per day for three weeks to promote the development of fine motor movements - is said to have a very good success rate, but it is not available on the NHS or locally. The unaffected 'good' arm is put in a cast for a few weeks, and the child engages in therapy.
To give Hope the best chance of being able to use her hand, Shannon and Joshua have launched an online fundraiser to help pay for the treatment and for their accommodation as they will have to take Hope to a centre in Manchester.
The target is to raise 5,000. She has been provisionally booked in to start the therapy at the end of January and it is hoped it will be life-changing for the toddler.
Shannon, who previously worked as a support worker for disabled adults but has now had to give up work to look after Hope and see to her health needs, said: "Hope's brain will grow until she is eight and it is likely then we will know where she is going to be a. It's hard to envisage six and a half years of not knowing anything.
"At the moment she is okay in that she does not seem to be cognitively affected by the stroke, but we won't know for sure until she is at school. Her legs have only been moving for the last three to four months. She is crawling but not walking just yet.
"She is a happy baby now she is moving. Before she was really cross. However, if you offer her a toy to her right hand she shake her head really angrily.
"She is now saying about 20 words so the pediatrician is happy with her speech."
Shannon and Joshua have a three-and-a-half year old son called Elijah. When they fell pregnant with Hope, at first things seemed fine.
Shannon, who did not have the Covid vaccine during her pregnancy, recalled: "When I was 17 weeks pregnant I woke up with a numb leg. I saw my GP the next day and was sent for a leg scan the day after which showed I had a blood clot.
"I had to inject myself twice a day and when I had got to 20 weeks my waters broke. There was no big gush and I was told it didn't happen that early, but if I was worried to go to hospital.
"I did and as it was during the middle of Covid I was by myself. I was told to call my husband for him to come in and I was told my baby was fine and there was still some fluid around her and that I would likely be giving birth to her in the next 72 hours."
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Instead, the pregnancy continued and after weekly blood tests and scans, Shannon was induced at 38 weeks.
Shannon recalled: "Hope did not receive her six week check or an assessment when she had her vaccinations due to Covid. It means beyond 24 hours old, she never had her newborn reflexes checked so I dont know if the issue could or should have been flagged then.
"When we noticed Hope was not using her right hand, we initially put it down to her being born prematurely as Elijah had shown a preference for using his left hand.
"Hope experienced a delay in diagnosis and treatment due to our GP insisting that her non-use of her hand and arm was 'normal', meaning that she didnt start any treatment until nine months of age, and didnt receive a diagnosis until she was 14 months.
"Someone with experience would be able to tell she looks like she has had a stroke and you can see something is wrong with her hand, but other than that she looks just like a normal toddler."
To donate to Hope's fundraiser, please click here.
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