Ariana, Seizing the Moment!

Biggest fear as parents

One of our biggest fears for us as parents is when our phones ring between midday to 2 pm. Why? That is when we arrive at the school and there is an ambulance in the school driveway.  Just a few weeks after we released the Lacevault last year, Ariana had her first major seizure, what a sight to see? She was diagnosed with epilepsy and given medication which obviously did not work as earlier this year she had another severe prolonged seizure where she died for a few minutes in emergency. A very frightening experience for us as nurses and doctors were telling each other that there was nothing more they could do other than divine intervention. Our efforts, time, funds and attention were now totally committed to her. We have been through tough times; Isaiah being born with Down syndrome, our flourishing business loss and more, and in the midst of it all, Ariana was born, no eyes, completely blind, intellectual and global developmental delays and autistic.When she died in my arms we knew that we had to do something to save her life.

Not your normal seizure

The medical field cannot point her seizures to a single medical condition. She has rare neurological anomalies that not even the normal preventative, such as epilepsy medications, and emergency medications are helping. Most seizures by other people only last a couple of minutes or less, and they come out of them, but Ariana does not. These kinds of seizures may be referred to as clusters, prolonged seizures or status epilepticus. The implications of long lasting seizures can vary between extended post seizure recovery to a potentially life threatening situation.  During a seizure, Ariana is given midazolam, a powerful sedative that once absorbed into the blood, travels to the brain attaching to brain receptors that control electrical impulses that are firing at an unusually rapid rate.  However, there have been a few occasions where not even this powerful drug has worked to control the seizure, even when immediate emergency intervention was given to support her breathing and heart, her breathing and heart beat both on a couple of times had stopped for a few minutes. For us, that is where it really gets frightening!

“I love you little girl”

A few weeks ago, while the kids were on school holidays, Ariana had another seizure while Kiana (13) and Fale (9) were watching, crying and praying as Ariana again died in my arms. Ariana had lost everything from her stomach and I found myself yelling “Ariana come back, fight for your life”. After a few minutes I quietly whispered “Father please help me, this is beyond my control, help me if you can!” And then as to say goodbye to my little girl, I quietly whispered in her ear “I love you little girl”. In her limped state her right hand reached up and brushed me across my cheek a couple of times and then she left her hand there, something that I will never forget. At that moment I knew I had been given a little more time and I also felt that she would be OK, this time, no matter what happens in the next few days. After cleaning her up and an Ambulance trip to hospital, Hana called me to say that she had another seizure, in fact a couple, that the emergency team needed to bring her out of, but I simply told her that she was going to be fine this time.

Another seizure

A few days later, devastatingly, a close 15 year old friend of ours died from a seizure, he was an elite athlete. Kiana (13) especially, who was there, was reliving what had happened just a few days earlier with Ariana. Only days later on Friday, on the 18th of July, as we were at this family’s home to be with and to comfort them, I had a call from my sister-in-law that Ariana was in seizure again. What? As we got into the car, again we all said a silent prayer. Again, she needed to be revived as now Viliami saw it for the first time. Yes, we are very thankful for God, but at the same time we also need to help do something to keep Ariana alive and give her a better quality of life. This was a cause that we needed to get involved in and to see that we not only help Ariana, but other families, like our friends who have just lost their wonderful young warrior. That is when the Lacevault came back into the picture. Detailed tests and researches, medical experts, neurosurgeons, medical equipment and services, preventative medicines, Physio, Occupational, Speech Therapists and their works, tools, equipment, and so forth for Ariana will run into hundreds of thousands let alone helping other families. We need more than just an ordinary fund raiser as we could not keep asking family and friends to donate repeatedly. We know that are some absolutely wonderful people, family and friends out there, but we did not want to rely on them.

LaceVault will help Ariana

So now, we need something that will perpetually raise the funds to not only help Ariana and Isaiah, but potentially could also help other families!?!? Well, Viliami’s invention, The Lacevault, inspired by Isaiah and Ariana will effectively do that, but we needed to see if it was still marketable, so we had met with 2 Major Retail Outlets.  They absolutely loved the product and agreed to purchase 100,000  each, but only after we can show that we can get our friends to help us sell 10,000 Lacevaults.  So we need your help to get 10,000 orders ensuring that the funds will perpetually be there for Ariana. Buy one and share it with everyone you know.

Much Love and Appreciations.

Love, love, love,
Leihana and Fale Mahe