Life is Better at the Beach with Macaroon Collection

Written by Keta's Mom, Kirtsy Wright

 

At the age of 2, Keta-Lea developed boils on her right hip, which took a long and painful time to heal. Doctors think this was the cause of her rare auto-immune disease: Linear Scleroderma.

 

After four years of numerous specialist consultations, spanning from Durban to New York, Keta’s condition was finally diagnosed.  Due to cost and distance, we settled with a highly renowned professor in London.  We were under this professor in Rheumatology’s care for about 6 years, travelling there once a year to see the professor and having thermal scans with another specialist, to show how active the disease was.

 

From age 7, Keta has had methotrexate injections once a week, which we had to give her. This almost broke us as parents as it was excruciatingly painful for her.

Keta’s Scleroderma started with one little patch on her lower back, which over the years spread throughout her body, primarily restricting the growth of the righthand side of her body. Another form of Scleroderma is an aggressive atrophying syndrome, called Parry Romberg Syndrome, which has severely affected her face and neck.

 

This disease is so cruel, it causes the skin to dry and shrink, losing all elasticity and changing colour eventually degenerating muscle and affecting bone formation.

We are so grateful that Keta’s Scleroderma has stayed localized and not gone internally as was our huge scare when she was 6 years old. In other word’s it has stayed on a skin and muscle level mainly and has not affected her lungs or caused her internal organs to harden.                                                                                 

In addition to Scleroderma, at the age of 12, Keta was diagnosed with Dystonia. This is a hereditary disease, that causes involuntary muscle spasms. At the time of this discovery, we were completely devastated and over whelmed as parents, but not Keta. She kept saying:

“God’s got me”

… such a mature, faith-filled statement, which actually reminded me again of how little we have control of and how much God can have ...if we allow Him.   

                                                                                        

Keta’s Scleroderma was thought that it would burn out by the time she reached her teenage years, which has definitely, very sadly, not been the case. The disease was dormant and controlled for a little while but has come back strongly in the last 2 years, and continues to ravage her body.

 

The Trust fund set up for Keta to cover the London appointments ran out 3 years ago. This Trust Fund was established through people’s incredible generosity which we will always be indebted to and grateful for. 


Since the depletion of the funds, we have been  seeing local specialists in SA, but have found that the expertise is so much more advanced overseas as they are exposed to many more cases.

After fighting for so many years we have decided that we cannot give up now and so have been told by Keta’s current Specialist in Pretoria that the best specialist focusing entirely on Scleroderma is in Italy.

Keta in Italy

 

This disease has cruelly ravaged her body but definitely not touched her soul, spirit or mind. Keta has the most positive, well adjusted, confident and outgoing personality. She has not allowed this disease to define her or stop her in anyway. If anything, it has helped make her an even more special, caring and aware of others feelings and needs.  As parents, we have always told her that her health “is what it is” and tried to concentrate on her mind and spirit more than her disease - on what she can do rather than what she can’t do.                                                                                                                   

The Dystonia has affected her fine motor skills so she battles to write.  She does most of her work on a laptop, which her school has so amazingly embraced.

 

But Kets is determined to do whatever it takes to beat this dreaded disease…She hasn’t lost hope!!

Keta’s story is not a sad devastating one, but rather, one of Courage, bravery and victory!!!

 

Over the past years especially   2017 we have done a few fundraisers, organised by close friends. We are extremely grateful for all the love and encouragement we have received and having the financial ability to pay for all the things Keta need .. It has taken huge pressure off us to provide financially for all Keta needs. 

John and I are truly thankful to anyone who chooses to support Keta in her journey to overcome and conquer this dreadful disease.

Xxxx Kirst

 

**To make donations or contribute in any way towards Keta's journey - please contact Kirst directly at wrightkirst@gmail.com