Philip was born 1994 as the second child in our family. His older sister was 3,5 years old. The MTS developed subtly. When he was 3 we realized that his speech and language development stalled. He was very restless, displaying behavioral problems and lacking impulse control. At the same time he started suffering from ENT infections. This was the beginning of a long walk through hell.
After going through an early detection pediatric screening in Feb. 1998 he was diagnosed with a grave sensory processing disorder, attention deficit and a mental and psychomotor retardation, esp. a retardation of language and speech. Shortly afterwards the MHH Hannover detected a "Brainstem-auditory Processing Disorder", asa auditory neuropathy.
We felt horrible and shocked being faced with all these medical facts, the sensation of helplessness paralyzed us.
Philip suffered consistently from otitis of the middle ear. Once the pus already came out of the ears, the smell was awful, this condition remained for weeks. The poor boy swallowed tons of antibiotics, it is almost a miracle that he did not get a meningitis.
As time went by Philip received occupational therapy and logopedics, he had to endure several surgeries on the ears, his behavioral problems were severe - it was a hard time for the whole family.
In these days it was not a given that children were taught sign language. It must have been terrible for Philip to be left without a method to express himself. He knew a few words but had only a limited vocabulary. This may be a proof for him being born with hearing abilities before the gradual loss started.
Phils sign language training started when was 11 years old, but neither his behavioral problems nor his ENT infections had improved. In 2006 we moved from Minden (nearby Hannover) to Freiburg im Breisgau. As we wanted to help him with his horrible pussy rhinitis and ears we arranged an apointment in the Medial Center of the University - and finally Philip got help. An MRI showed a chronic mastoiditis, he got surgery and we hoped for a happy end.
Unfortunately life continued with ongoing problems and more surgeries.
Through the years he had to endure around 30 general anesthetics, finally in his teens a radical mastoidectomy was made. Since then his health condition is more stable. In case of infects he still has to take antibiotics early, but one can come to terms with that.
But I will never forget all the frightful moments and nightmares I had because of him.
As the attempt to provide him with hearing aids failed when he was a child, he got CI as to his own request when he was 15 years old. Unfortunately this was much too late and without success. We were told before the treatment that the chances of a successul CI procedure were very low, but we are glad that we did not leave out this option.
Nowadays Phil is no longer willing to cooperate to such an extend.
Currently he lives in a sheltered housing that offers not only intensive care but also sign language training. We see each other regularly and are in close contact to his caretakers. As to his health status he is stable. He suffers from problems concerning muscle control, a light tremor and at times he gets paranoid or depressive, is mentally challenged, deaf and has only little vocabulary and no speech comprehension. It was not until May 2019 that we got to know that his suffers from MTS and not from the auditory neuropathy.
The best thing we can do at the moment is to live in the here an now, enjoying life to the fullest. We hope that the MTS ((TIMM8A-Gen:tranclocase of inner mitochondrial membrane 8A) will have a mild course and both of the boys will benefit from a dolphin-assisted therapy in 2020.