Weʼre raising £2,000 to Rett Syndrome - unequal struggle with genes
- Poole, UK
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My Princess.. My little sunshine.. She means the world to me..
She was born on the 15th November 2013. Lovely little girl. Made me so happy and proud. Was growing and developing nicely. Until she was 17 month. That is when all has started. The child suddenly started to develop severe problems with communication and language, memory, hand use, mobility, co-ordination and other brain functions. Some of the characteristics and behaviors were similar to those of autism spectrum disorder. For over two years been seen by plenty doctors, specialists, hundreds tests been done. With no diagnosis made. Until 24 April 2018. She has had some genetic tests done at the Southampton University Hospital. Diagnosis : Rett Syndrome. For more info you can visit : https://www.nhs.uk/conditions/rett-syndrome
I am scared and worried for my Sunshine.. There's no cure for Rett syndrome, so treatment focuses on managing the symptoms. She may benefit from some of the following treatments and aids:
*speech and language therapy, picture boards, eye gaze technology and other visual aids to help with communication
*medication for breathing and mobility problems, and anti-epileptic medicine to control seizures
*physiotherapy, attention to mobility, careful attention to sitting posture (to minimize the chances of scoliosis developing), and frequent changes in posture
*if scoliosis does become established, a back brace and sometimes spinal surgery may be used to prevent the spine curving further
*a diet to help maintain sufficient weight, with the use of a feeding tube and other feeding aids if necessary .
*occupational therapy to help develop the skills needed for dressing, feeding and other daily activities
*a hand splint to help control hand movements, if these are severe (they're mainly used for limited periods to prevent self-injury or to encourage activities with the other hand)
*beta-blocker medication or a pacemaker to control heart rhythm
*therapeutic horse riding, swimming, hydrotherapy and music therapy also can be beneficial.
"Silent Angel" is the title of a documentary about Rett Syndrome. It would not be as loud about if, if one of the famous actresses of Hollywood-Julia Roberts did not participate in it. The film concerns the life of girls and their families. Contrary to what the title says, this is not peaceful, angelic life paved with roses ...
These cute girls people tend to call "Silent Angels". As a result of their illness they have closed up, have lost the ability of speech, walking, body control. Girls suffering from genetic, a very rare condition called Rett Syndrome, were until recently considered to be autistic,deeply impaired, deleted by doctors. Today it is known that they are often completely healthy minds, sealed in afailing body, which really want to communicate. However, they may do so only in one way-eye movements. Only just above the eyes they retain control.
For over two years, Julia’s and my life obey the daily therapies and activities. Only because of this Julia is in a pretty good shape if compare with other Silent Angels. Doctors say we won the lottery. Although her condition is getting worse day by day, Julia is still walking. Still uses her hands. What is also amazing she is trying to communicate. Yes-it is a kind of the lottery won… Hard-fought by this little Angel’s everyday uphill work.
Therapies available by NHS are so poor.. Just few hours a month which does not seem to be enough. Private treatment tho, is beyond our reach. It cost an arm and a leg… From this point I would like to ask anyone with a good heart to support my lovely daughter. All the funds will be spend only for Julia's therapy and treatment.
Thank you in advance
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Mariola & Lucas
Sep 29, 2018
Duzo zdrowka! x
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Wszystkiego dobrego ❤️
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