My name is Leigh Hemms, me and my partner Kelsey are in the process of setting up a charity for our gorgeous little angel Ayla Mae Hemms. Ayla-Mae is suffering with a condition called spastic quadriplegic cerebral palsy. This condition means that Ayla will probably not be able to walk and will need constant care for the rest of her life. Below i have put a description of her condition.What other conditions are associated with cerebral palsy?Intellectual disability. Approximately 30 "“ 50 percent of individuals with CP will be intellectually impaired. Mental impairment is more common among those with spastic quadriplegia than in those with other types of cerebral palsy.
Seizure disorder. As many as half of all children with CP have one or more seizures. Children with both cerebral palsy and epilepsy are more likely to have intellectual disability.
Delayed growth and development. Children with moderate to severe CP, especially those with spastic quadriparesis, often lag behind in growth and development. In babies this lag usually takes the form of too little weight gain. In young children it can appear as abnormal shortness, and in teenagers it may appear as a combination of shortness and lack of sexual development. The muscles and limbs affected by CP tend to be smaller than normal, especially in children with spastic hemiplegia, whose limbs on the affected side of the body may not grow as quickly or as long as those on the normal side.
Spinal deformities and osteoarthritis. Deformities of the spine"”curvature (scoliosis), humpback (kyphosis), and saddle back (lordosis) -- are associated with CP. Spinal deformities can make sitting, standing, and walking difficult and cause chronic back pain. Pressure on and misalignment of the joints may result in osteoporosis (a breakdown of cartilage in the joints and bone enlargement).
Impaired vision. Many children with CP have strabismus, commonly called "cross eyes," which left untreated can lead to poor vision in one eye and can interfere with the ability to judge distance. Some children with CP have difficulty understanding and organizing visual information. Other children may have defective vision or blindness that blurs the normal field of vision in one or both eyes.
Hearing loss. Impaired hearing is also more frequent among those with CP than in the general population. Some children have partial or complete hearing loss, particularly as the result of jaundice or lack of oxygen to the developing brain.
Some early warning signs:
In a Baby Younger Than 6 Months of Age
His head lags when you pick him up while he's lying on his back
He feels stiff
He feels floppy
When you pick him up, his legs get stiff and they cross or scissor
In a Baby Older Than 6 Months of Age
She doesn't roll over in either direction
She cannot bring her hands together
She has difficulty bringing her hands to her mouth
She reaches out with only one hand while keeping the other fisted
In a Baby Older Than 10 Months of Age
He crawls in a lopsided manner, pushing off with one hand and leg while dragging the opposite hand and leg
He cannot stand holding onto support
Spastic quadriplegia/quadriparesis is the most severe form of cerebral palsy and is often associated with moderate-to-severe intellectual disability. It is caused by widespread damage to the brain or significant brain malformations. Children will often have severe stiffness in their limbs but a floppy neck. They are rarely able to walk. Speaking and being understood are difficult. Seizures can be frequent and hard to control.Above is just a few of the symptoms of this terrible condition, if you would like to read more please read the link below.
We are looking to set this charity up to help fund more treatment for Ayla Mae. There are few goals in which we have to pass in order to make this charity reach its full potential, these goals are all explained below.
· In order to get the full benefits of being a registered charity I need to raise £5000 pounds before I can get a registration number.
· Once I have this registration number raising money for Ayla will become much easier as I will be able to reach out to cooperate companies which will help me sponsor big events, which will also lead to much more mony being raised.
· Once these goals have been reached the big plan towards Aylas funding will be to get her more physio therapy as she only gets one hour of physio a month through the NHS which is not enough. in the future we hope to be able to go to America where we have seen some marvellous results through Stem Cell Research, but this goal will be further in the future as the minimum cost of this is £80,000. With pysio and stem cell research combined it will give Ayla Mae a good chance and hope to the fact that one day she will be able to walk and loosen up her hands,(which is also essential as she is also profoundly deaf and needs her hands to learn sign language)
· The ultimate goal further down the line is to help other familys who have been going through the same struggles with cerebral palsy and to help with what ever we can with there needs.
we will try and upload videos and pictures of Ayla as much as possible for you all to see her progression with this condition.
many thanks to everyone
Leigh, Kelsey and Ayla-Mae