Help Maia lead a normal life and makes wonders

Maia's Story:

Maia is the youngest among her 2 siblings. Due to early rupture of membrane and placenta previa, I was brought to the hospital at 27 weeks, which resulted in the birth of Maia at 30 weeks. Due to oligohydramnios (decreased amniotic fluid) and her two cord loops at birth, Maia was born with difficulty breathing and required continuous positive airway pressure (CPAP). She spent 54 days in the NICU and experienced episodes of apnea.

Maia had a stormy neonatal course. When we brought her home at 35 weeks and in just for 5 days while feeding her, I notice that she was limp, not responsive despite stimulating her and no pulse. Thankfully I am a nurse and with my instinct I immediately perform chest compressions and on our way to the hospital, I was able to revive her and it happened again when she was 3 months. (Imagine the trauma reviving your own daughter thinking if she will make it) and YES! she survived!!

She had an EEG done by her pediatrician. As a result, and the diagnosis was seizure disorder. Many tests were carried out, including many chest x-rays, which revealed right lung atelectasis (collapsed). Brain ultrasound, Lumbar tap that was normal.Swallowing test, hearing test was passed the third time after being failed twice. She got a cardiac echo that revealed pulmonary hypertension, but it gradually went away.

We were also advised to contact a pediatric development specialist because Maia is not meeting her developmental milestones, which worries me. She was diagnosed with spastic quadriplegia cerebral palsy at the age of six months and Global developmental delay. We found it really difficult to absorb and digest. She was examined by an ophthalmologist as well, and happily, her 450 eye grade is now 50. Her eye doctor here in the UK and back home both say that she has exotropia, or the outward turning of the eyes, and occasionally esotropia, or the inward turning of the eyes. The only way to correct this alignment is by eye surgery.

She received a diagnosis of spastic quadriplegia , cerebral palsy, Global developmental delay, seizure disorder, gastroesophageal reflux, Exotropia, and feeding difficulties.

Here in the UK:

I am working as a nurse full time and my husband is also working part time ,we've been here for just a year, and its not easy.

She was seen by a number of physicians and teams when we got here, including those from neurology, community pediatrics, ophthalmology, audiology, the SALT team, dieticians, physiotherapists, and occupational therapists. A number of tests and investigations were also carried out, including blood works, genetic testing, hearing, vision, swallowing, physical therapy, occupational therapy, and so on. The most recent test was Lumbar tap and MRI, which was completed in December 2023, and the results indicated that Maia has dystonia. Due to her limb spasms and stiffness, Maia struggles to get a full hours of sleep at night. Instead, she wakes up every three to four hours. She can only express herself by crying or yelling.

Maia is so stiff that she is unable to sit, walk, crawl or even use her hands correctly. She also has truncal hypotonia ( weak muscle tone of her trunk). Her diagnosis is impairing her gross and motor abilities, making it harder for her to move about without our assistance.

Back home (Philippines), she attended four times a week or sixteen sessions in a month of therapy; here in the UK, she only attends once or twice a month, and we conduct the majority of her therapy sessions at home with my spouse. We are grateful that all of the mobility aids she needs are being provided.

Our goal in raising the funds is for her to attend intensive therapies and other equipment's that are not covered by NHS, to enable Maia to lead the most self-sufficient and contented life possible. Like all parents, all we want is for Maia to be happy and independent. Maia is turning 3 this March. Because of her dystonia, spasticity, constipation, and lack of sleep, she is often highly agitated, irritated, and uncomfortable, even on her good days. We sincerely hope you will be able to allow Maia to lead a normal life.

Any amount of donations is very much appreciated.

Thank you very much!