Discover the journey of Paloma and her family
On December 31, 2010, after a simple ophthalmology consultation and various additional tests, the news came: our princess had Neurofibromatosis type II.
For all these years, Paloma has been fighting against this genetic disease, and we, her parents, try to make her daily life as simple and pleasant as possible, when we are not at the hospital.
Edwige and Gilles San José
The Princess Paloma Association, a non-profit organization, was created on March 4, 2017 to raise awareness of Neurofibromatosis type 2 (NF2) and to raise funds to cover the costs related to our princess's illness and to provide Paloma with daily well-being.
By being in daily contact with families of sick children and within hospital wards, we became aware of the needs of families and their children, as well as the gaps in services. Therefore, the association also helps sick children by providing them with well-being and offering, for example, respite stays in the mountains, in the fresh air, or wigs with real hair.
The association advises other families affected by NF2 and raises funds to support medical research for NF2.
In 2024, our association became the leading NF2 association in France.
Finally, the development of braille in establishments open to the public is one of the projects that Paloma also wishes to accomplish through the Princesse Paloma association.
Your support is essential to continuing our mission. Every donation allows us to improve Paloma's daily life and help other families affected by NF2.
A journey of courage and hope
His ophthalmologist was perplexed on the day of the consultation, and as a precaution, sent us to have a brain MRI at Lenval on December 31, 2010.
The axe fell: we were expected immediately at the Archet 2 Hospital in the Pediatric Hematology Department. The only words spoken by the radiologist at Lenval were: "You'll have to be strong, Madam, your daughter is going to need you." (That was my first and last appointment without my husband!).
The three of us went up to the Archet Hospital… Then everything happened in quick succession… from the operation for the meningioma (benign tumor on the left optic nerve) in January 2011, the operation for the tumor that was compressing the spinal cord at the cervical level in February 2011, the 28 radiotherapy sessions when the meningioma grew again, the radiotherapy sessions when the hearing fell due to a Schwannoma on the right auditory nerve.
The new operation in October 2013 when the meningioma behind the left eye grew a second time resulted in hemorrhage and partial paralysis of facial motor function on the left side (the left eye has been fixed since then, the eyelid has remained closed and sensitivity is reduced).
The start of "chemotherapy" every 15 days to try to stabilize all these benign tumors, even the very small ones she has along her spine which weaken it (wearing a corset to stabilize her scoliosis).
Radiotherapy sessions for the Schwanome located on the left auditory nerve, for the retinal detachment of the right eye which was operated on in May 2017 and then again in June 2017…
Since that date, her vision has completely deteriorated to the right, and a very small lateral window of vision still persists in her left eye when she manually opens her eyelid. Her hearing, however, is only functional in her left eye.
Follow-up examinations continue three times a year to monitor hearing in the left ear. Since December 2020, the chemotherapy has been spaced out to once a month because the follow-up MRIs every four months are stable.
But tremors in her right hand and difficulty lifting her left foot are increasingly bothering her and worrying us… Paloma goes to the physiotherapist twice a week to work on her balance, her head posture, her left ankle, and to relieve her back pain…
The verdict came thanks to more targeted MRIs: a tumor had grown in her lower back and was compressing the sciatic nerve, preventing her from lifting her left foot normally. Three sessions of CyberKnife radiation therapy took place in early March 2022.
Since August 2022, we have been taking Paloma to Denmark regularly for Acunova (acupuncture) treatment to try to regain some of her hearing and vision by decompressing the nerves that are compressed by the tumors. There are positive results…but it's a long road…
Her hearing on the left side has now declined, communication is more difficult… Paloma withdraws into her own world when we are with people, because she can no longer follow conversations.
In August 2023, Paloma confided in us that for over six months she had been hearing voices (auditory hallucinations), but it was all very unclear to her: she didn't know if they were coming from outside or inside her body, she didn't know if we, her parents, could see them… Paloma was afraid we would think she was crazy for telling us this… It's awful to hear this from your own child…
The voices she hears are very aggressive and vulgar (things Paloma doesn't know), they give her orders day and night, 24/7, and it's becoming so unbearable that Paloma feels compelled to tell us about it; it's no longer manageable for her. We now sleep with her for fear that the voices will order her to do things that endanger her life.
To date, no treatment has been found to alleviate these auditory hallucinations (the cause of which remains a mystery: is it a meningioma? The isolation Paloma suffers from?). Paloma hears her own voices more than ours, and communication is very difficult, if not impossible…
Walking and balance are becoming increasingly difficult; she walks with her brace on the left, a walker that helps her to walk and feel a little more independent (because she doesn't hold onto our arm), and when she is tired we use the wheelchair.
The months go by, each one much like the last. We communicate only with a slate, onto which we magnetize raised capital letters so Paloma can read our words with her little fingers… the days are long… the slates keep coming… outdoor activities are limited without sight and hearing, if we don't have the slate with us… everything is very complicated… and the auditory hallucinations are still there…
On June 30, 2025, it's Paloma's 21st birthday, she receives the most beautiful gift: the placement of a cochlear implant on her left ear.
After waking up, the implant was activated, and that day became one of the happiest days of our lives: Paloma could hear us! She answered us, she started telling us jokes again… tears flowed… it was so incredible and unexpected…
Paloma is continuing her speech therapy exercises, her hearing is improving more and more in her left ear, and her comprehension is improving week by week…
Paloma dreams again of activities, meeting new people, shopping, listening to music, watching television…things so trivial for some but so unexpected for others…
Discover our story in pictures
