Young Ellané Burger (8) from Wellington, Western Cape was recently diagnosed with an extremely rare condition. Her family has tried for most of her life to find a doctor who could provide her with a definitive diagnosis, and found one who could do so only recently.
Ellané has been diagnosed with Disabling Pansclorotic Morpea, a disease so rare that only a few children around the world have it. The condition manifests itself in aggressive lesions leading to severe joint contractures and consequent immobility.
Her skin, nerves, muscles and joints are severely affected, causing Ellané to have trouble walking even for short distances – she cannot run, jump or even stand upright on her own.
She has extremely thin arms and legs and does not have enough strength in her limbs to move on her own.
Since her diagnosis, she has had a number of operations but was recently been told she cannot be operated upon until she is at least 12 years old. She recently dislocated her knee and needed an operation to correct the damage done.
While they wait until more can be done to make their daughter more comfortable, Ellané’s family is trying to raise money to give her as much mobility as possible.
“We really need help for our daughter, Ellané,” said her father Johan.
Her family is trying to raise money to help her move and assist with day-to-day mobility. This involves getting her an electric wheelchair which will cost approximately R200 000, a custom vehicle to be able to transport her in at R500 000 and lastly a lift for their house to be able to easily bring her up and down the stairs at R300 000.
Despite her hardships, Ellané is a cheerful little girl filled with amazing spirit. Her family is hoping to provide her the full potential to live the life that she desires.
Her family is aiming to get her all of the equipment she needs to move by the end of December 2019.
“It will change everything about how Ellané can experience life and assist her to make the little things easier to experience. The chair will also assist her to communicate at eye level and interact with friends and family. These mobility aids will help her to move around where she is very homebound currently. This will make such a big impact,” her father says.
If you want to help Ellané move and live a full life, you can donate here.
Picture: Johan Burger