Yuna Saito
Text: Akira Saito (father)

Yuna Saito was born in Ibaraki Prefecture in 2009. She has congenital spina bifida (myelomeningocele), with hydrocephaly and Chiari malformation type II as complications. She spends her life in a wheelchair, with no sensation from the waist down: even broken bones (she fractured her right femur in 2013) do not cause her any pain. She eats via a gastrostomy tube and needs urinary catheterization and enemas, as well as oxygen suction while sleeping. She has had 13 surgeries (18 surgical procedures) so far. She is currently in the sixth grade of a special needs school.

My daughter Yuna, who became a sixth grader at a special needs school this spring, has congenital spina bifida. She cannot move her limbs from the waist downwards, nor does she have any feeling in this part of her body. Put simply, spina bifida[1] is a condition in which, for whatever reason, part of the skin, muscle, or bone in the hips is missing, exposing the spinal nerves.

After a surgery (to repair the myelomeningocele), symptoms of complications appeared, and so she also underwent surgeries for hydrocephaly and Chiari malformation type II. Chiari malformation caused a respiratory disorder, and the doctor in charge of her care recommended that a tracheotomy be performed as soon as possible, looking ahead to the future. We tearfully requested that the surgery be carried out. During the half a year before she left hospital, she was operated upon a total of six times. I am proud of my daughter for withstanding the surgeries and fighting, despite being so small.

When my daughter was about two years old, I heard her say “Ah” in a small voice. At first, I thought that I might have misheard, since she was not able to utter any sounds. However, she became able to speak words after that, albeit gradually. Guess what? Although she has a tracheotomy, she is now able to talk normally. Yes, a “miracle” happened. Her doctor was also surprised, saying that it was a unique case. At that time, I thought that miracles do happen.

She uses a wheelchair at home, but through becoming able to talk, she also became able to communicate. We live in a village in the countryside, and so most of our neighbours are elderly. When we go for a walk, they all treat her as though she were their own grandchild. Thanks to this, my daughter’s friends are in their 60s and 70s. Around the time she entered the special needs school, she often enjoyed going to the local community centre with her grandmother to drink tea and chat. The words she learned there, such as “hammer” for the tires of her wheelchair or “bat” for an umbrella, did not mean anything to her school teachers, of course, since they are local dialect. However, I truly believe that this was a case of taking a village to raise a child, as the saying goes, and that she has grown thanks to everyone.

Because she has limited spatial awareness, perhaps due to the effects of hydrocephaly, she moved last year from Course 1 (the same lesson content as at regular schools) to Course II (lesson content aiming at independence), but she seems to really enjoy going to school each day. She appears to particularly like playing boccia in PE classes, as well as music and crafts. She also goes to a day service twice a week after school. She very much looks forward to the days when she attends because everyone there enjoys playing games together, and it is a different environment from the one at school.

After coming home, she enjoys playing on the computer in her own way, writing pieces or copying from her textbooks using Word. She is also interested in animals and insects, and often reads books about them.

On days off, we often take her to the shopping mall. We have to carry out catheterization every four hours, come what may, so we can only go to places equipped with the facilities for this (a bed in the accessible toilet). Accessible toilets are often provided, but there are few facilities equipped with a bed. I feel that it will take a bit longer before normalization becomes widespread.

My daughter’s dreams for the future seem to change day by day - at the moment, she is crazy about NiziU’s songs and dances – but she hopes that she can live independently. I also have a dream for the future, as a parent. I would like to hold my daughter’s hand and walk together, just once, if that were possible. I also dream of making sure to live just one day longer than my daughter. Miracles definitely happen.