LITTLE MIGUEL NEEDS YOUR HELP – GOAL R50 000
Miguel is an 8-year-old, completely non-verbal autistic boy. That is how he is usually described. However, the last 6 months have been the worst ever for little Miggz. Autistic is not the “diagnosis ” for Miguel, we have also found out that he has Fragile-X Pre-mutation, he has the worst self-injurious and self-disruptive behaviour most of his doctors have ever seen. His condition is extremely rare, and his body is rejecting every single medication we have tried.
Our last admission to hospital was Miguel’s lowest point yet. He has fisted his jaw so badly that doctors had to extract 10 teeth due to the fact that he literally broke them himself.
We have done all possible tests and Doctors have prescribed every possible medication to get Miguel’s anxiety, extreme mood disorders, self-injurious behaviour under some form of control.
None of the above has worked and I have seen my boy go from a happy, loving, caring and very brave boy, that never sheds a tear, to a little child that is constantly medicated to stay calm, on the highest schedule medication and so filled with gut-wrenching fear for anything that looks anything remotely like a Doctors room or Hospital.
I just want to give Miguel quality of life; I want to see his dimple smiles again and I want to hear him laugh again.
I am a single mom and Miggz is my only child. We live with my Mom and Sister that have given everything they have, physically and emotionally to help with little Miguel, however, we are falling apart little by little every day without a diagnosis for Miguel.
I just need to find out what is wrong with my angel child, as a mother I am broken, exhausted and just cannot see my child like this anymore. The only other option for Miguel is Deep Brain Stimulation surgery. It could change his life and give him the ability to exercise basic life skills.
Although he is unable to communicate, Miguel has a perfect understanding of what is going on around him, he understands everything we say but cannot talk back, cannot tell us if he has a headache, tummy ache, if he is thirst, hungry…sad or just wants to go outside.
The frustration he has not being able to communicate and thinking that I am unable to understand his needs is so heartbreaking.
Our home is a big guessing game when he gets upset…we offer and they everything possible. By the time we have understood what he actually needs or wanted Miguel is so exhausted and upset that it sets off yet another breakdown that sees Miguel hit his head on multiple rock-hard surfaces, walls anything he can find until he reverts to his own fists.
Miguel has had DNA testing done, the MicroArray test however the results that came back were shocking, to say the least. The result was something the geneticists COULD NOT find in a single Archive in the UK, USA etc. His DNA coding was found to be undocumented.
This meant that not only did we have no answer but it is clear that Miguel is suffering through this without the correct medical treatment.
Miguel’s doctors have asked that we have the blood sent to Centogene in Germany to have a Whole Exome Sequencing test done as a matter of urgency. However, it is not cheap. The test itself ranges between R15 000 – R16 000. Excluding the courier costs to get it there.
Having a diagnosis for Miguel and knowing how to medicate will change his life in such a way that it will give him life again. The opportunity to live a normal life….well…as normal as possible.
The impact of having a diagnosis or some idea of how to move forward with Miguel’s treatment would be life-changing to him and our small family.
It would mean that he would stop hurting himself so extremely badly and those around him. It would mean that he would be able to be on less Schedule 5 and 6 meds. He currently drinks 7 different types of medication just to fall asleep. He would be able to enjoy life for what it is, we are not born to suffer and seeing my child go through this on a daily, even hourly basis has broken me, unlike anything I can imagine.
I have always made sure I give him the best, even if it was above my means. If it meant that little Miggz would be at peace and happy even just for an hour I would do it.
This year has been extremely taxing and tragic for the entire world, but it has also unfortunately caused major financial burdens and as a result, I just cannot manage the cost of this extremely urgent blood tests.
The funds raised, God willing, will pay for the courier costs and actual costs of the urgent blood tests that will be sent to Germany as well as a payment towards the surgery.
The test itself is approximately R15 000 and the courier fees are approximately R1400 to get it to Germany via Ampath Laboratories.
Funds raised will be paid directly into the relevant institution.
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