Help Juanevieve go to USA for surgery

Juanevieve Grobler (12) from Primrose Hill might look different to most children; however, her mind is no different and that is the strength and assurance her mother and father empowered her with.

Her parents, Jacques and Mariè, requested help from the community for her surgery in the USA.

“We formed an NPO called Juanevieve’s Unique Angels to help Juanievieve and other children like her.”

They said she was diagnosed with:

• Klippel-Trenaunay-Weber (KTW) syndrome, where one side of the body is bigger than the other.
• Proteus syndrome, where any part of her body or an organ can start growing excessively.
• Lymphedema, which results in her immune system is weakened. Sunlight causes Juanevieve to swell.
• Tracheomalacia, which results in her airway collapsing at any point because the cartilages are not strong enough to keep them open.
• Partial KTW syndrome, which results in underdeveloped hip sockets.
• Severe clubfeet.

“Juanevieve had the Ponseti method done but needed a tenotomy because her right foot tendon did not stretch enough. The tenotomy was done and her feet were placed in the incorrect position with the cast on too tight,” said Jacques.

“She also got special shoes, but because her feet were not in the right position the entire process was nullified.”
An American orthopaedic surgeon and clubfoot expert, Dr Matthew Dobbs, who specialises in paediatric foot deformities showed interest in operating on the little girl.

“This will cost over $50 000 (R732 858), according to the doctor. As a family, we have learnt that together we are stronger,” said Mariè.

“We are determined to help Juanievieve, other children and families, by spreading the word about these special children.”

The mother added it is difficult to live and not know what will happen to her daughter tomorrow.

“We take in every precious moment and make it count. Juanevieve loves to sing and play with her dogs.”

She is an energetic little one who doesn’t believe in not being able to do certain activities. “My daughter is always willing to try and help do chores and loves being outdoors,” said her mother. Her parents treat her like any other child so she doesn’t focus on her conditions.

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“We never hide anything from her because she needs to be able to support herself and know where her boundaries are. We explained that although she looks a little bit different, there is nothing wrong with her mind.”
Mariè said they have many wishes for their daughter but the most important wishes are that she will receive necessary treatments for all her conditions and rare syndromes and create awareness.

“People should know these little angels are out in the world trying to survive and cope with different problems.

“There are not a lot of support groups in South Africa for many of these conditions.”

The Groblers advised parents of children with similar conditions to not treat their child different from other children. “Treat them with respect and dignity and teach them that although they look different, they are just as special as any other child. Be positive and show the world that those children who look a little different are not so different at all.”

Mariè hoped Juanievieve will receive the necessary surgery and treatments she will be able to enjoy her life feeling normal.

To find out how you can help contact Mariè Grobler on 0614086693 or at juanevievesuniqueangels001@gmail.com

Contact the newsroom by emailing:

Marietta Lombard (Editor) germistoncitynews@caxton.co.za,  or (Journalists) Busi Vilakazi busiv@caxton.co.za , and Lebogang Sekgwama lebogangs@caxton.co.za.